RRF Grant

[RedHotCanuck]

From: David Pascoe [david.pascoe@rosacea-research.org]
To: rosacea-research-foundation@yahoogroups.com
Sent: Mon 10/10/2005 7:39 PM

The Rosacea Research Foundation is pleased to announce that our funds have
been allocated to a grant.

The grant will be allocated to a study called "Structural and biologic
changes in the rosacea skin induced by pulse dye laser and intense pulsed
light". The grant has been awarded to Drs. Payam Tristani-Firouzi and
Nancy Samolitis.

Dr. Chuck Young, Artist Cloutier and David Pascoe would personally like to
thank the following for their expert opinion in reviewing and ultimately
approving this grant.

Rosacea Research Foundation Medical Advisory Committee

Dr. Linda Sy
Board Certified Dermatologist
Linda Sy Skincare

Dr. Nicholas Soldo
Anaesthetist & IPL Consultant

Dr. Peter Drummond
Associate Professor,
School of Psychology
Murdoch University

Dr. Chuck Young
Vice President
Rosacea Research Foundation

National Rosacea Society Medical Advisory Board

Dr. Jonathan Wilkin, Chair
Director Dermatologic and Dental Drug Products
U.S. Food and Drug Administration

Dr. Mark Dahl
Chairman of Dermatology
The Mayo Clinic - Scottsdale
(former AAD president)

Dr. Michael Detmar
Associate Professor of Dermatology
Harvard Medical School

Dr. Lynn Drake
Harvard Medical School
(former AAD president)

Dr. David Norris
Chairman of Dermatology
University of Colorado

Dr. Richard Odom
Professor of Dermatology
University of California at San Francisco
(former AAD president)

Dr. Frank Powell
Consultant Dermatologist
Regional Centre of Dermatology
Mater Misericordiae Hospital, Dublin, Ireland

Dr. Bryan Sires
Boyd K. Bucey Memorial Chair of Ophthalmology
University of Washington

This grant will form part of the 2005 Grant Program as part of the National
Rosacea Society's annual grant scheme. The Rosacea Research Foundation
will be credited as the source of funding for this grant.

David Pascoe
--
David Pascoe,
President, Rosacea Research Foundation, http://www.rosacea-research.org
mailto:david.pascoe@rosacea-research.org



Below are the details of the recently announced grant.


STRUCTURAL AND BIOLOGIC CHANGES IN ROSACEA SKIN
INDUCED BY PULSE DYE LASER AND INTENSE PULSED LIGHT

Dr. Payam Tristani-Firouzi, Assistant Professor,
Dr. Nancy Samolitis, Visiting Professor,
Department of Dermatology,
University of Utah School of Medicine.

Drs. Tristani and Samolitis plan to examine the effect of pulse dye laser
(PDL) and intense pulsed light (IPL) treatment of rosacea to determine
whether, in addition to reducing the amount of blood vessels, these
procedures produce structural and biologic change in the skin that may
help identify and increase understanding of the causes of this disorder.

The researchers will visually and microscopically assess the primary
features of rosacea before and after treatment with PDL and IPL, including
redness (erythema), visible blood vessels (telangiectasia), bumps
(papules) and pimples (pustules).

In addition, biopsy samples before and after treatment will be tested for
factors that are increasingly recognized as playing a potential role in
the development of rosacea. These will include the presence of
inflammatory cells (perifollicular inflammatory infiltrate), vascular
endothelial growth factor (VEGF), interleukin-1 (IL-1) and factor XIII.

The researchers will also assess the size of oil (sebaceous) glands and
the presence of Demodex mites, a normal inhabitant of human skin that has
been observed in greater numbers in rosacea patients.

The study will include 10 patients with subtype 1
(erythematotelangiectatic) rosacea and subtype 2 (papulopustular) rosacea,
each received treatment on one side of the face with the other side
serving as a control. The overall severity of these signs of rosacea will
also be evaluated by the patients.

[Bob Bear]

Superb, a few more like this and we might be able to get the NHS to recognise IPL as an actual rosacea treatment.

[Brady Barrows]

This will make 2005 a banner year for rosacea research with whatever amount the grant is from the RRF added to the NRS's awarding grants in the amount of $146,419. And the RRF has surely joined forces with the NRS giving approval of how the NRS spends its total funding, including for the last seven years $3,368,592 spent on one private contractor, Glendale Communications, Inc that is owned by Sam Huff, Director of the NRS.

A rosacean now has just three choices for donating:

(1) Donate to the NRS and specify the money for rosacea research.

(2) Donate to the RRF who will do number 1 above.

(3) Donate to the RRDi who will not give the money to the NRS but to really novel rosacea research that rosaceans want and not spend the majority of its donations to one private contractor who also happens to be the director. The RRDi has a strong conflict of interest policy.

[Chris23]

Sounds exciting to me, and I hope we hear more from this in the near future.

[Warren]

I think the [[National Rosacea Society]] has being doing a mediocre/poor job at representing us as a non-profit organisation and it is good to see that change is happening and more money being spent on research for us. The [[Rosacea Research Foundation]] has done a great job to actually both solicit enough donations and to also successfully fund a grant. Along with the [[Rosacea Research and Development Institute]] it shows that we can make a difference.

[drnase]

From: David Pascoe [david.pascoe@rosacea-research.org]
To: rosacea-research-foundation@yahoogroups.com
Sent: Mon 10/10/2005 7:39 PM

The Rosacea Research Foundation is pleased to a

..........................

each received treatment on one side of the face with the other side
serving as a control. The overall severity of these signs of rosacea will
also be evaluated by the patients.


Hello Group,

If one emotionally detaches from everything that has been going on these last three months and examines the grant funded with your money, I feel that this grant is my fault. I have placed too much pressure on the RRF to either fund a grant or give rosacea sufferers their money back. This resulted in a hasty, non-helpful grant. In any academician's eyes this grant would not have passed any peer-reviewed process. On a scale of 0 to 10 -- with 0 being "poor" and "10" being excellent the rating would probably be a "1" based on known evaluation protocols. Even if everyone was on best of terms, this would be my same critique.

This grant does nothing to help rosacea sufferers:

1. It is not novel

2. It shows us nothing about the underlying causes of rosacea

3. This study has already been performed in large part

4. This study gives us no new insight into better laser treatments, protocols, flushing methodologies, how to treat triggers, how to stop the regrowth of blood vessels, etc.

5. The number of patients is the lowest number that can be used to find a statistical significance. This number should at least be doubled or tripled. 10 patients in one group does not cover the spectrum of rosacea symptoms and inflammatory factors in one subtype.


This grant is analagous to studying the effects of oral tetracycline on rosacea. Nothing new at all or nothing presented to build on.


For example, in order:

1. We already know that blood vessel number is decreased after laser treatment, and that new blood vessels that are formed are smaller and thicker walled.

2. We already know that laser treatment of any form downregulates I-CAM, VEGF, INOS, inflammatory cytokines and helps restructure the dermal architecture to help the lymphatic vessels work better to remove fluids and metabolic waste products.

3. The primary features already have been visualized with basic microscopic techniques. This is nothing new for any rosacea symptoms.

4. We already know that in many rosacea sufferers, the increased blood flow, fibroblast activity and DHT stimulation increases the size and number of sebaceous glands and subsequently makes for a better habitat for demodex.

5. Is there anything postitive at all that we will learn from this grant and be able to build on -- NO. Absolutely nothing.


How could this money have been spent more wisely:

1. Spending all the money on renting the best in vivo confocal microscope and detailing the rosacea sufferer's vascular network to the exact micron. Elucidate the sizes, angles and shapes of all blood vessels going down to the adipose cells. That would have been an awesome study. This then allows for better treatment because laser physicians know that at certain depths in the skin, blood flow is a certain amount, blood vessels are a particular size, vessels are oriented a special way, and how deep they would have to go. This would have advanced their ability to better treat rosacea by 10-fold and finally treat resistant cases by knowing the exact vascular pathology so that laser physicians would know exact protocols to use.

2. Determining how to get better results -- evaluating different pre-flushing mechanisms (topical, oral or neural), measure blood vessel responses to find the best flushers and then evaluating the results; conversely, treatment with angiogenesis inhibitors post laser (topical or oral) by itself would open up a new world of treatment. Also the use of clotting factors (either injections or oral factors) to enhance the death of blood vessels not fully treated could have lead to remarkable strides. This study could have utilized new "blood dyes" to be delivered IV into the patient so that we would only need to use a very specific wavelength to successfully treat the blood vessels as the "blood dye" only reacts to a particular wavelength -- this takes out the entire guessing game and almost ensures immediate results that are vastly improved.



How else could the RRF have spent their money to induce the greatest change in rosacea treatment and perception:

1. A couple people on the RRF, most notably, Schelly Scheen, spent months designing the most incredible one page flyer and two page brochure (in color and very professional) to re-educate all physicians, dermatologists and pharmaceutical companies on rosacea and the need for better treatments and better studies. These brochures are just a few hours away from being completed, but no one has put in the few hours in 5 months now to get these finished and mail them to every single dermatology office and pharmaceutical company -- we already have all the addresses piled up and ready to be printed out for mailing. The brochures were our biggest achievement as they would instantaneously replace the overloaded Galderma pamphlets at every doctors office. Just a few hours to fine tune everything and these brochures would have made more difference than any 10 rosacea grants that they could fund. I just cannot believe they could not find the time to finish these brochures by setting aside one night to polish them off in 5 months.

I have re-read my message several times before posting to make sure that it was fair, pointed out the flaws of the grant with an academician's logical perspective, and detail how the money would have been much better spent. I certainly hope this post comes across as intended. Please do not re-invent the wheel for us. Teach us how to make shock absorbers for our wheels. :shock:

[Rick]

You repeatedly state "We already know ...". Perhaps you could list the relevant open-literature publications supporting your observations?

Rick

[coldbliss]

Well...if we find something new from this study, then it will be money well spent. Maybe this study will provide better laser treatment protocols for resistant patients.

[Bob Bear]

Geoffrey,

Thanks for those suggestions. I agree, a study on preflushing in laser treatment would be excellent. I wonder if the RRF, NRS and RRDi would consider organising / funding such a study, as Im convinced it'd be most beneficially.

Do you think they are leaving that for private physicians to experiment with?

Would it be a difficult / expensive study to perform?

[drnase]

You repeatedly state "We already know ...". Perhaps you could list the relevant open-literature publications supporting your observations?

Rick


Just a few of the articles that address all the factors in this study. Some of the information on inflammatory substances in facial skin following laser is in the actual journal as all abstracts have word limitations. Tons of histological studies performed already on each variable. Lots of discussion on infiltrates and cytokines, sebaceous glands, demodex and laser, VEGF, Interleukins, etc.. Sun damage, redness and rosacea are lumped together. There are about 50+ more articles like these.

[Edited out by Moderator]

Bitter, P., Sr. and Nase, G.P. "Skin Rejuvenation for Sun Damage, Aging and Rosacea using Intense Pulsed Light." Lasers in Aesthetic Surgery. Keller, G., Lacombe, V., Lee, P., Watson, J.P., eds. Thieme Medical Publishers, NY, 2000, pgs. 351 - 357.



J Drugs Dermatol. 2004 Sep-Oct;3(5 Suppl):S4-11. Related Articles, Links


Combination therapy in clinical and cosmetic dermatology: the marriage of device and drug.

Nestor MS.

Center for Cosmetic Enhancement and University of Miami School of Medicine, Department of Dermatology and Cutaneous Surgery, Miami, Florida 33180, USA.

The first generations of lasers used in clinical and cosmetic dermatology achieved their effects by means of epidermal and dermal ablation. While effective in removing some of the stigmata of photodamage including pigmentary changes and rhytides, vascular abnormalities associated with such conditions as melasma and rosacea, were not sufficiently effective. The new generation of laser and non-laser light devices (eg, intense pulsed light or IPL) offer excellent results in the management of clinical and cosmetic conditions, including significant changes in improvement in vascular conditions such as rosacea and actinic damage and stimulating dermal collagen production, without significant injury to the epidermis. The combination of light therapies and topical agents adds to the efficacy of these procedures, particularly in post-procedural maintenance. Light-based therapies have been an important addition to the anti-acne armamentarium as they are effective and do not add to the increasing bacterial resistance problem.




Dermatol Surg. 2005 May;31(5):522-5. Related Articles, Links


Effects of intense pulsed light and the 1,064 nm Nd:YAG laser on sun-damaged human skin: histologic and immunohistochemical analysis.

Prieto VG, Diwan AH, Shea CR, Zhang P, Sadick NS.

Departments of Pathology, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA.

BACKGROUND: Nonablative methods may produce collagen synthesis in sun-damaged skin. OBJECTIVE: To study the effects of intense pulsed light (IPL) and 1,064 nm neodymium:yttrium-aluminum-garnet (Nd:YAG) laser: a histologic and immunohistochemical analysis of sun-damaged skin. MATERIALS AND METHODS: Nine subjects participated. Five subjects received five-monthly treatments with IPL (560 nm cutoff filter, 8 x 35 mm spot size, pulse duration 2.4/4.2 milliseconds, pulse delay 15 milliseconds, fluence 28-35 J/cm2). Four subjects received treatment with a 1,064 nm Nd:YAG laser (130 J/cm2, triple pulse, 7.0/7.0/7.0-millisecond pulse duration, 75-millisecond delay). Routine histology and immunohistochemistry on 2 mm punch biopsies were taken before treatment and then at 3 and 6 months. We quantified collagen in the upper dermis and expression of heat shock protein 70 and procollagen 1. RESULTS: Pretreatment specimens contained solar damage. After treatment with the 1,064 nm Nd:YAG laser, the amount of collagen in the papillary dermis was slightly thicker than in those subjects treated with the IPL device (nonsignificant differences). Scattered dendritic cells in the papillary and upper reticular dermis expressed heat shock protein 70 and procollagen 1 after treatment with either light device. CONCLUSION: Both the IPL and 1,064 nm Nd:YAG laser-induced heat activation of superficial dermal dendritic cells resulted in deposition of collagen in the papillary dermis without evident morphologic damage to the epidermis or dermis.





J Cosmet Laser Ther. 2004 Jun;6(2):69-78. Related Articles, Links


Nd:YAG laser combined with IPL treatment improves clinical results in non-ablative photorejuvenation.

Trelles M, Allones I, Velez M, Mordon S.

Instituto Medico Vilafortuny/Antoni de Gimbernat Foundation, Av. Vilafirtuny 31, ES-43850 Cambrils, Spain. imv@laser-spain.com

BACKGROUND: Intense pulsed light (IPL) sources have been reported in non-ablative photorejuvenation, but the excellent histological findings do not always coincide with the clinical results and patient satisfaction index (SI). METHODS: Ten female patients (two forehead, four periocular and four perioral), ages ranging from 28 to 46 years, skin types II-IV, wrinkle types I-III, participated in the study. The IPL system was applied with the yellow (570 nm) cut-off filter, 30 J/cm(2), single pulse, followed by the Nd:YAG at 120 J/cm(2), double pulse (7 ms per shot with 20 ms between pulses) on the wrinkled areas only. Three sessions were given at monthly intervals, and an assessment was made 1 and 6 months after the third session. Biopsies were taken from four consenting patients as a cross-section before the first treatment and then 1 and 6 months after the third session. For clinical control and contrast of tissue results, a group of 10 patients (two forehead, four periocular and four perioral; ages ranging from 27 to 47 years, skin types II-IV, wrinkle types I-III) was treated only with IPL, using the same parameters and sessions. Histologies were taken from four consenting patients. RESULTS: The histology showed thickening of the epidermis with good dermal collagen organization in both groups. However, the combined treatment showed more dramatic changes in histological tissue condition, and ectatic blood vessels were seen in the deeper dermis. The patient SI values, related to the results, were lower when IPL was used alone. All patients completed the study. In the combined treatment group, overall SIs of 8 (80%) and 8 (80%) were obtained at the control points of 1 and 6 months, respectively, after session 3, compared with SIs of 6 (60%) and 4 (40%) scored by patients in the IPL group at the same points. Discomfort and side effects were minimal in both groups. CONCLUSIONS: The addition of the Nd:YAG laser to the IPL regimen in non-ablative skin rejuvenation gave very good histological results, which were echoed by stronger patient satisfaction than in the control group treated only with IPL. Visible improvement in the skin condition of both groups was achieved, but was better in the combined treatment group.




Lasers Surg Med. 2002;30(2):82-5. Related Articles, Links


Effects of intense pulsed light on sun-damaged human skin, routine, and ultrastructural analysis.

Prieto VG, Sadick NS, Lloreta J, Nicholson J, Shea CR.

Department of Pathology, UT-MD Anderson Cancer Center, Houston, Texas 77030, USA.

BACKGROUND AND OBJECTIVE: New, non-ablative methods can be used in skin rejuvenation. Histologic analysis of non-ablative IPL effects on facial, sun-damaged skin. STUDY DESIGN/MATERIALS AND METHODS: Five female subjects, wrinkle class I or II and Fitzpatrick skin types I, II, and III. IPL treatment: once monthly, 560-nm cut-off filters, spot size 8x35 mm, 28-36 J/cm. Routine histology or electron microscopy on 2-mm punches, before treatment and then 1 week, 3 months, and 12 months. RESULTS: Pre-treatment specimens contained solar elastosis and perifollicular lymphoid infiltrates. Collagen and elastic fibers appeared unaffected by treatment. At 1-week, Demodex organisms appeared coagulated. CONCLUSIONS: Under these conditions, IPL induces minimal morphologic changes in mildly sun-damaged skin. Some esthetic improvement may be secondary to clearing of Demodex organisms and reduction of associated lymphocytic infiltrate. Copyright 2002 Wiley-Liss, Inc.




J Am Acad Dermatol. 2000 Jul;43(1 Pt 1):49-53. Related Articles, Links


Elucidating the pulsed-dye laser treatment of sebaceous hyperplasia in vivo with real-time confocal scanning laser microscopy.

Aghassi D, Gonzalez E, Anderson RR, Rajadhyaksha M, Gonzalez S.

Wellman Laboratories of Photomedicine, Department of Dermatology, Massachusetts General Hospital, Boston, MA 02114, USA.

BACKGROUND: Several case reports document successful treatment of sebaceous hyperplasia with the pulsed-dye laser. Moreover, noninvasive real-time confocal laser scanning microscopy elucidates the vascular nature of these lesions and their pathophysiologic response to treatment mediated by vessel coagulation. METHODS: Ten patients with 29 lesions of sebaceous hyperplasia were treated with 3 stacked 5-mm pulses of the 585-nm pulsed-dye laser at fluences of 7 or 7.5 J/cm(2). Confocal imaging was performed before and immediately after treatment, as well as at 2, 4, and 8 weeks of follow-up. RESULTS: The great majority of lesions responded to one treatment, with complete disappearance in 28%, decrease in diameter in 66%, and flattening in 93%. Although 28% recrudesced after initial involution, only 7% recurred completely. Three lesions became eroded or crusted, and 7 experienced cutaneous depressions before complete healing, but no scarring or pigmentary side effects were noted. Confocal imaging revealed a prominent "crown" of blood vessels surrounding the sebaceous duct and coagulation of these vessels with pulsed-dye laser treatment. However, the vessels reappeared during follow-up, and no noticeable morphologic changes in the sebaceous duct were noted. CONCLUSION: Vascular targeting of sebaceous hyperplasia can be monitored with real-time reflectance confocal microscopy. Most sebaceous hyperplasia regresses after one treatment with 3 stacked pulses of the 585-nm pulsed-dye laser. Whether this response is due to temporary ischemia induced by selective vessel destruction or nonspecific thermal diffusion beyond the vessels from pulse stacking has not been determined.





Lasers Surg Med. 1999;25(1):8-12. Related Articles, Links


Confocal imaging of sebaceous gland hyperplasia in vivo to assess efficacy and mechanism of pulsed dye laser treatment.

Gonzalez S, White WM, Rajadhyaksha M, Anderson RR, Gonzalez E.

Wellman Laboratories of Photomedicine, Dermatology Laser Center, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts 02114, USA. gonzalsa@helix.mgh.harvad.edu

BACKGROUND AND OBJECTIVE: This case demonstrates, for the first time, the use of in vivo confocal imaging to assess the efficacy of laser treatment of a skin lesion with a vascular component. STUDY DESIGN/PATIENT AND METHOD: A patient with lesions of sebaceous gland hyperplasia was histologically imaged in vivo before and after treatment with a 585 nm pulse dye laser (PDL) by using a near-infrared, confocal reflectance microscope. Hyperplastic sebaceous ducts and sebaceous glands were seen with high resolution in vivo. Prominent dermal vasculature was viewed as well as its selective targeting by PDL. CONCLUSION: Our results confirm the previously reported successful treatment of sebaceous gland hyperplasia with the 585 nm PDL. Copyright 1999 Wiley-Liss, Inc




Drug Ther Bull. 2004 Oct;42(10):73-6. Related Articles, Links


Laser treatment for skin problems.


Lasers and related 'intense pulsed light' (IPL) devices are increasingly being used to treat people with skin conditions in NHS dermatology and plastic surgery units, private hospitals and clinics, and cosmetic salons. Typical targets for such treatments include conditions involving excessive blood vessels (e.g. port-wine stains), pigment (e.g. tattoos), inflammatory lesions (e.g. psoriasis), scars, excess hair, tumours and wrinkles. This broad and expanding range of uses raises questions about the effectiveness, safety and appropriateness of laser and IPL treatment. Here we consider these and other key issues in the use of these techniques to treat patients with skin problems.





Lasers Med Sci. 2003;18(2):104-11. Related Articles, Links


Non-ablative facial skin photorejuvenation with an intense pulsed light system and adjunctive epidermal care.

Trelles MA, Allones I, Velez M.

Instituto Medico Vilafortuny/Antoni de Gimbernat Foundation, Cambrils, Spain. imv@laser-spain.com

Laser skin resurfacing is popular, but the appearance of the face during healing is unpleasant. Non-ablative photorejuvenation with intense pulsed light (IPL) has been reported as being successful but with varied results. In this study we sought the possibility of enhancing the clinical effects with adjunctive epidermal care. Twenty-five women aged from 32 to 68, skin types I-IV, with a variety of wrinkle types and other conditions associated with photoaged skin, were treated with IPL according to our parameters over six sessions coupled with an adjunctive pretreatment micropeel and applications of nutritive and antipigmenting creams. Macroscopic and histological assessments were performed. At weeks 4 and 8 fair to good satisfaction was noted in 17 and 19 patients, and poor satisfaction in 8 and 6 patients, respectively. The histology showed good dermal collagen remodelling in all cases, with a reduction in elastosis. The results of IPL photorejuvenation can be enhanced, as our trials showed. The good patient satisfaction obtained was clearly demonstrated in the histologies and evaluations throughout the study.

[drnase]

Interesting:


At 1-week, Demodex organisms appeared coagulated. CONCLUSIONS: Under these conditions, IPL induces minimal morphologic changes in mildly sun-damaged skin. Some esthetic improvement may be secondary to clearing of Demodex organisms and reduction of associated lymphocytic infiltrate. Copyright 2002 Wiley-Liss, Inc.

[Kris Jacobs]

Well put Dr. Nase.
I thought this study looked a little outdated.
What a waste of money.


Dr. Nase,
Please give us updates on your rosacea consulting endeavor.
When I saw this on your website, I just about jumped out of my seat.
I havent been this excited in years.
Maybe I will consider going to law school in the Indiana area so I can meet you and benefit for your knowledge and expertise.

Kris Jacobs

[Bob Bear]

I do see a problem with constructive critisism when and wear it is due.

That said, I do praise the NRS for putting their feet in the right direction. I hope they can continue this way.

[prryjones]

First of all, whats an "open literature" publication? Sounds like a made-up phrase to me....(at least I can tell you that all the pharmacy journals are available to public scrutiny...there are no "secret" journals, open only to a select audience. Just have to know were to look, or purchase access to them. I strongly suspect others are the same.
Anyway...ingoring the idiot who tells us not to give money to Dr. Nase (idiot...please paste a post where Dr. Nase is asking for money?), I would say the main frustration I have with Dr. Nase's post is that there IS no alternative to funding rosacea research (via NRS, RRF). m What choice do we have? Give to the NRS or the RRF or not give at all. Is a poor study worse than no study?
Doesn't it feel good, folks, knowing that the future of rosacea research is in our own hands? Wow.

[drnase]

First of all, whats an "open literature" publication? Sounds like a made-up phrase to me....(at least I can tell you that all the pharmacy journals are available to public scrutiny...there are no "secret" journals, open only to a select audience. Just have to know were to look, or purchase access to them. I strongly suspect others are the same.
Anyway...ingoring the idiot who tells us not to give money to Dr. Nase (idiot...please paste a post where Dr. Nase is asking for money?), I would say the main frustration I have with Dr. Nase's post is that there IS no alternative to funding rosacea research (via NRS, RRF). m What choice do we have? Give to the NRS or the RRF or not give at all. Is a poor study worse than no study?
Doesn't it feel good, folks, knowing that the future of rosacea research is in our own hands? Wow.



Hi Perry,

With other options availble by the RRF, I do not think funding a poor study is better than funding no study at all.

I was giving constructive advice on how that money could have been much better spent instead of throwing it towards a study that does not help us. To get those gorgeous brochures out to all dermatologists, pharmaceutical companies and biotech companies would be 10 times better than funding that grant.

I no longer have access to the brochures and one page flier, but if the RRF would be so kind as to supply a link to the brochure and flier in PDF form, everyone will see how great they are and maybe some people will figure a way to get them out.

[drnase]

Geoffrey,

Thanks for those suggestions. I agree, a study on preflushing in laser treatment would be excellent. I wonder if the RRF, NRS and RRDi would consider organising / funding such a study, as Im convinced it'd be most beneficially.

Do you think they are leaving that for private physicians to experiment with?

Would it be a difficult / expensive study to perform?



I think it would be a great study and set up standards for safety and flushing efficacy for different flushers. Then you cut out all the guessing. I laugh at many posts when they say they go in for treatment and they are the palest they have ever been -- Ive been there. Rosacea has a mind of its own and quite a sense of humor or irony or evilness.

Flushing protocols are here now, but they are the future too.

I honestly think that many physicians do not know to go after these vessels and do not understand that those active flushing vessels are not open or active while being treated -- so you never treat them.

It would not cost anymore money. Try adenosine, viagra, Ace inhibitor derivatves, L-arginine, but all under tight supervision to monitor blood pressure and other variables.

I also cannot stress how important the Vitamin K shots could be to every single person being treated. It takes about 24 hours to go into full effect, but you would only have to partially destroy a vessel and it would die as long as it clots. If it doesnt clot, it lives, is now structurally damaged and is quite mad at you. :D

[Bob Bear]

I do see a problem with constructive critisism when and wear it is due.

That said, I do praise the NRS for putting their feet in the right direction. I hope they can continue this way.


Opps, sorry I meant 'DONT see a problem with constructive critisism'. Damn typos. :oops:

[drnase]

Well put Dr. Nase.
I thought this study looked a little outdated.
What a waste of money.


Dr. Nase,
Please give us updates on your rosacea consulting endeavor.
When I saw this on your website, I just about jumped out of my seat.
I havent been this excited in years.
Maybe I will consider going to law school in the Indiana area so I can meet you and benefit for your knowledge and expertise.

Kris Jacobs


Hi Kris,

Thanks. We will be in full swing once things on my plate clear up.

[prryjones]

Hi Geoff,
My reply wasn't directed at you. Sorry if it sounds this way.
I guess I am frustrated simply because I feel helpless in promoting valid rosacea research since the fall of the RRF.
I don't trust the NRS, the RRF is not what it was, and so what is a person to do but wait for someone else to do something? This is where we were several years ago. Just floating around like jellyfish.
At least with the RRF (while you were with it), we felt we were giving to a worthy cause. There was a point to all this.
Now, nothing.
Very frustrating.
Perry

[Bob Bear]

Geoffrey,

Thanks for those suggestions. I agree, a study on preflushing in laser treatment would be excellent. I wonder if the RRF, NRS and RRDi would consider organising / funding such a study, as Im convinced it'd be most beneficially.

Do you think they are leaving that for private physicians to experiment with?

Would it be a difficult / expensive study to perform?



I think it would be a great study and set up standards for safety and flushing efficacy for different flushers. Then you cut out all the guessing. I laugh at many posts when they say they go in for treatment and they are the palest they have ever been -- Ive been there. Rosacea has a mind of its own and quite a sense of humor or irony or evilness.

Flushing protocols are here now, but they are the future too.

I honestly think that many physicians do not know to go after these vessels and do not understand that those active flushing vessels are not open or active while being treated -- so you never treat them.

It would not cost anymore money. Try adenosine, viagra, Ace inhibitor derivatves, L-arginine, but all under tight supervision to monitor blood pressure and other variables.

I also cannot stress how important the Vitamin K shots could be to every single person being treated. It takes about 24 hours to go into full effect, but you would only have to partially destroy a vessel and it would die as long as it clots. If it doesnt clot, it lives, is now structurally damaged and is quite mad at you. :D


How would a study like this be set up, from the perspective of the non-profit organisations?

Do they have to wait for someone to approach them, or do they actively seek to set up studies? If so, we should suggest they look into this pronto, as preflushing seems to be confusing many, MANY people. And more importantly, the lack of proper information is preventing rosaceans getting the best treatment, and burning huge holes in their pockets (as well as cheek!).

[fanta]

The RRF cant donate money to the NRS, thats totally ludicrous to tell us that. If rosaceans wanted to support the NRS they would send a cheque directly to them, not through the RRF. Well, no need to debate this here, its none of our business. After all, 18000 dollars from own pockets is not that bad when they are 4

[Rick]

Just a few of the articles that address all the factors in this study....

I suspect you think that simply cutting and pasting these references in to a post, and assuming that no technical person will read them, is enough to lend some technical credibility to your arguments.

Again, the funded grant will focus on “the presence of inflammatory cells (perifollicular inflammatory infiltrate), vascular endothelial growth factor (VEGF), interleukin-1 (IL-1) and factor XIII.”

Not counting your book chapter with no abstract, you list 8 abstracts, which, for reference, I number in the order in which you list them. Numbers 1-3, plus number 8, focus on collagen regeneration after IPL. Of course, this is a well studied result. And, of course, the RRF investigators implicitly agree – where do you see that in their submission? It is not there because they are not proposing to study it.

Number 4 does discuss Demodex and reduction of associated lymphocytic infiltrate, a small, secondary aspect of the content of the RRF grant.

Numbers 5 and 6 discuss the well-known impact on sebaceous hyperplasia. Again, there is precisely zero overlap with the RRF grant.

Number 7 is a superficial discussion of using lasers to correct skin problems. Do you really see this as related to the RRF grant?

I do agree that 10 patients is a small population, but many recent laser studies have far fewer, e.g. the excellent paper {“Objective and Quantitative Improvement of Rosacea-Associated Erythema After Intense Pulsed Light Treatment”, Mark K.A.; Sparacio R.M.; Voigt A.; Marenus K.; Sarnoff D.S., Dermatologic Surgery, Volume 29, Number 6, June 2003, pp. 600-604(5) , Blackwell Publishing} outlines a much-needed quantitative approach to the evaluation of IPL efficacy for rosacea. This was accepted by a leading derm journal, yet had only 4 patients.

You need to produce more than a handful of regurgitated, unrelated abstracts to support your arguments.

I will close with a suggestion that you confine your comments to technically defensible facts, not your ongoing dispute with the RRF board and their supporters. I am proud to admit that I am one of the latter. I contributed to RRF, and I commend the RRF board and MAC for their dedication and patience in building the necessary consensus to fund a worthwhile grant.

Rick

[fanta]

well, I support the study, four people donate some money to two researchers. These researchers contribute to the society by buying goods and services. Also the RRF will have to reimburse 18000 dollars to donators, meaning that we get a total of 36000 dollars of spending - isnt it what America needs?

[Brady Barrows]

First of all, whats an "open literature" publication? Sounds like a made-up phrase to me....(at least I can tell you that all the pharmacy journals are available to public scrutiny...there are no "secret" journals, open only to a select audience. Just have to know were to look, or purchase access to them. I strongly suspect others are the same.
Anyway...ingoring the idiot who tells us not to give money to Dr. Nase (idiot...please paste a post where Dr. Nase is asking for money?), I would say the main frustration I have with Dr. Nase's post is that there IS no alternative to funding rosacea research (via NRS, RRF). m What choice do we have? Give to the NRS or the RRF or not give at all. Is a poor study worse than no study?
Doesn't it feel good, folks, knowing that the future of rosacea research is in our own hands? Wow.

Perry,
There is a choice. The RRDi. I can assure you that we will not join the NRS in their rosacea research. It will be novel and exciting research and rosaceans will make the decision on what to research.

http://www.irosacea.org

[Brady Barrows]

The RRF cant donate money to the NRS, thats totally ludicrous to tell us that. If rosaceans wanted to support the NRS they would send a cheque directly to them, not through the RRF. Well, no need to debate this here, its none of our business. After all, 18000 dollars from own pockets is not that bad when they are 4

The amount sent to the NRS has not been disclosed. The email from
David Pascoe clearly said,

"This grant will form part of the 2005 Grant Program as part of the National
Rosacea Society's annual grant scheme. The Rosacea Research Foundation
will be credited as the source of funding for this grant. "

What part of the above statement don't you understand that the money went to the NRS?

[fanta]

The RRF has not proven eligible to run a rosacea research foundation when they arent capable of making 1 single rosacea research grant by themselves, thats simply remarkable.

[Rick]

The RRF has not proven eligible to run a rosacea research foundation when they arent capable of making 1 single rosacea research grant by themselves, thats simply remarkable.

Fanta's comments about the RRF are without merit. It takes more than 18K to fund a reasonable grant, and RRF followed the right course in pooling its funds with those of NRS to obtain the optimal impact.

RRF bashing serves little purpose at this point.

Rick

[RedHotCanuck]

How about a grant to find out why it costs so damn much for IPL?

I'd like to see the IPL Doctors support that one.

[fanta]

Rick, the RRF is over so lets move on. We better discuss something that really does matter instead of discussing this small study.

[fanta]

How about a grant to find out why it costs so damn much for IPL?

I'd like to see the IPL Doctors support that one.

I dont think they are so expensive, they are just too risky for many here.

[Brady Barrows]

The RRF has not proven eligible to run a rosacea research foundation when they arent capable of making 1 single rosacea research grant by themselves, thats simply remarkable.

Fanta's comments about the RRF are without merit. It takes more than 18K to fund a reasonable grant, and RRF followed the right course in pooling its funds with those of NRS to obtain the optimal impact.

RRF bashing serves little purpose at this point.

Rick

When a non profit organization is formed, the public is entitled to know what its mission is and to see how the organization spends it funding. That is the law, in the USA. Then, there are reviewers, like myself, who are critical of its operation, and others who rate non profits. www.guidestar.org will give you its rating of the NRS or any other non profit if you pay them a fee. This gives you an idea of why it is proper to 'bash' or review the spending of non profits, especially since donations to such organizations are tax deductable in the USA. All non profits must report to the Internal Revenue Service of the USA how they spend their funds. The RRF is not required to file this form 990 until April of next year for the spending it does in 2005. Then this information by law is available to the public to review for themselves to determine if they think the RRF is spending its funding properly or how they might like this organization or not.

What concerns me the most about how the RRF spent its funding is not on the study chosen but the fact that it is approving of the NRS and how it spends its funding. The RRF, by joining the NRS, sends the message to rosaceans that how the NRS spends its funding is just fine with the RRF. I have been critical of the NRS since I found out how it spends its funding over the past seven years. The NRS received in donations over the past seven years $5,569,108 and spent a total of $463,622 on rosacea research. That means that about 8% of total donations was spent on research. That means that of every dollar donated to the NRS less than eight cents is spent on research and the rest is used to run the organization and provide the services mentioned above in the first paragraph. An interesting expense is mentioned in Part II - Compensation Paid to the Five highest paid independent contractors for professional services to Glendale Communications Group, Inc. owned by Samuel B. Huff, the Director of the National Rosacea Society. The total amount given to Glendale Communications Group, Inc. for the last seven years amounted to $3,368,592.

So the RRF has joined the NRS. The reply, no doubt, is that at least the spending of the RRF went primarily for rosacea research. Yes, isn't that good? It is good. However, by joining the NRS the RRF sends a message that it approves of the NRS and its directors, particularly Sam Huff. That is a criticism in my book. As I said in an earlier post, now rosaceans have two choices:

(1) Donate to the NRS and specify that the donation be used for rosacea research

(2) Donate to the RRF who will do number 1 above.

That isn't much of a choice. However there is an alternative: the RRDi, which will not join the NRS as long as it is spending its funding primarily on one contractor and very little on rosacea research.

When a non profit organization begins its operation or has been going for seven years or longer it is open to review and criticism.

[drnase]

The RRF has not proven eligible to run a rosacea research foundation when they arent capable of making 1 single rosacea research grant by themselves, thats simply remarkable.

Fanta's comments about the RRF are without merit. It takes more than 18K to fund a reasonable grant, and RRF followed the right course in pooling its funds with those of NRS to obtain the optimal impact.

RRF bashing serves little purpose at this point.

Rick



Rick,

You miss my point. If the RRF would please post a link to the 99.5% completed rosacea brochures, they would understand that the money would have been best spent on something that would have an immediate impact:

1. Re-educate derms and physicians (or open their eyes to the current situation.

2. Pharmaceutical companies and biotechnology companies involved in inflammatory disorders have no idea what type of market potential they have. These brochures are superb.

3. If you are going to perform a laser study, you perform one that tackles the key issue of producing better effects and/or addressing flushing triggers -- not one that you perform just to see what impact it has on many things that have been shown to occur. I have all those journals of the abstracts I submitted and they address every single issue and vasoactive factor discussed in the grant.

Thank you as always for helping rosacea sufferers with your knowledge.

[RedHotCanuck]

Were RRF donators aware that their donations were going to be used to help fund an NRS study? Or am I completely missing the boat here..

[Brady Barrows]

I do see a problem with constructive critisism when and wear it is due.

That said, I do praise the NRS for putting their feet in the right direction. I hope they can continue this way.

Bob,
We won't know what percentage the NRS spent in 2005 on rosacea research and how much went to Glendale Communications, Inc. until sometime next year. Based upon past years, the rise in rosacea research might jump to 10% to 15% of total funding, but that is only a guess. If you donated to the Red Cross and they spend 85% on administration and only 15% went to relief would you consider that a good non profit? What baffles me is the total lack of interest in how the NRS spends its funding and the interest of so many rosaceans on how the RRF spends its funding. Praising the NRS is not exactly what I thought the RRF would do.

[fanta]

It would be like Caritas giving away money to The Red Cross - I dont think many Catholic donators would like this happening.
If you have been trusted by donators to represent something specific you have to stick to it. The RRF has appointed some experts to a medical board, experts who claim to know whats good and bad when it comes to treating rosacea. So, why couldnt these rosacea experts make 1 single rosacea research grant themselves??

[drnase]

I do see a problem with constructive critisism when and wear it is due.

That said, I do praise the NRS for putting their feet in the right direction. I hope they can continue this way.

Bob,
We won't know what percentage the NRS spent in 2005 on rosacea research and how much went to Glendale Communications, Inc. until sometime next year. Based upon past years, the rise in rosacea research might jump to 10% to 15% of total funding, but that is only a guess. If you donated to the Red Cross and they spend 85% on administration and only 15% went to relief would you consider that a good non profit? What baffles me is the total lack of interest in how the NRS spends its funding and the interest of so many rosaceans on how the RRF spends its funding. Praising the NRS is not exactly what I thought the RRF would do.



Well said Brady. If you are going to move forward in any disorder, you must have multiple non-profit organizations that complement each other. This covers more ground in a much faster time frame.

[Brady Barrows]

Were RRF donators aware that their donations were going to be used to help fund an NRS study? Or am I completely missing the boat here..

Basically the RRF is a total mystery on how it operates, just like the NRS. All we can know is what form 990 says and what they say on their websites. The board of directors of both non profits make the final decisions. The medical advisory board of the NRS obviously decided on the study that the RRF chose to participate in. The medical advisory committee of the RRF went along with the NRS suggestion.

The RRF never hinted at any point that they were going to join the NRS in research. Donors are given special notices through some kind of arrangement. Whether the board had any input from rosaceans outside of the board of directors is not stated anywhere. Only a donor could tell you if they were notified that their donation was being spent on NRS research. At this point, since the money is spent, I doubt if anyone will get any refunds, but who knows?

[Brady Barrows]

===8<==============Original message text===============

Below are the details of the recently announced grant.


STRUCTURAL AND BIOLOGIC CHANGES IN ROSACEA SKIN
INDUCED BY PULSE DYE LASER AND INTENSE PULSED LIGHT

Dr. Payam Tristani-Firouzi, Assistant Professor,
Dr. Nancy Samolitis, Visiting Professor,
Department of Dermatology,
University of Utah School of Medicine.

Drs. Tristani and Samolitis plan to examine the effect of pulse dye laser
(PDL) and intense pulsed light (IPL) treatment of rosacea to determine
whether, in addition to reducing the amount of blood vessels, these
procedures produce structural and biologic change in the skin that may
help identify and increase understanding of the causes of this disorder.

The researchers will visually and microscopically assess the primary
features of rosacea before and after treatment with PDL and IPL, including
redness (erythema), visible blood vessels (telangiectasia), bumps
(papules) and pimples (pustules).

In addition, biopsy samples before and after treatment will be tested for
factors that are increasingly recognized as playing a potential role in
the development of rosacea. These will include the presence of
inflammatory cells (perifollicular inflammatory infiltrate), vascular
endothelial growth factor (VEGF), interleukin-1 (IL-1) and factor XIII.

The researchers will also assess the size of oil (sebaceous) glands and
the presence of Demodex mites, a normal inhabitant of human skin that has
been observed in greater numbers in rosacea patients.

The study will include 10 patients with subtype 1
(erythematotelangiectatic) rosacea and subtype 2 (papulopustular) rosacea,
each received treatment on one side of the face with the other side
serving as a control. The overall severity of these signs of rosacea will
also be evaluated by the patients.

===8<===========End of original message text===========
source >
http://health.groups.yahoo.com/group/rosacea-support/message/76412

[fanta]

Bye bye guys, I let you have this thread all alone now. Luckily, the RRF has been knocked out by itself #-o

[Bob Bear]

I do see a problem with constructive critisism when and wear it is due.

That said, I do praise the NRS for putting their feet in the right direction. I hope they can continue this way.

Bob,
We won't know what percentage the NRS spent in 2005 on rosacea research and how much went to Glendale Communications, Inc. until sometime next year. Based upon past years, the rise in rosacea research might jump to 10% to 15% of total funding, but that is only a guess. If you donated to the Red Cross and they spend 85% on administration and only 15% went to relief would you consider that a good non profit? What baffles me is the total lack of interest in how the NRS spends its funding and the interest of so many rosaceans on how the RRF spends its funding. Praising the NRS is not exactly what I thought the RRF would do.


I think you are a man in much better position to make judgement of this stuff than myself. I have no knowledge at all regarding the financial workings of non-profit organisations.

But if they are beginning to spend more money on effective research, then that must be a good thing, right?

Im quite sure there is a long journey ahead, but as long as we're all travelling in the same direction, then Im onboard.

[Brady Barrows]

A good non profit organization in the USA spends no more than 15% on administration or less. What do you Brits do over there when you want to donate to an organization like the Red Cross or for medical research? You really don't have non profits? Just curious.

[Bob Bear]

Oh, yes Im sure we have them too. Iv just never been in a position to donate (Im not long out of university, poor excuse I know!).

If 15% is the ceiling on admin costs, then how do the NRS justify taking such a monumental chunk of the corn?

[Warren]

Remember that the NRS is a multipurpose organisation and funding medical research is only a small part of what it does, there is also education and other activities that it funds. The only way to criticise the allocated % of funding is to compare it to similar organisations.

The RRF and RRDi are different in that they have only one goal and that is to fund rosacea research.

The RRF did not donate money to the NRS, they helped fund a study. 100% of the money spent by the RRF will go to this study, not supporting the ways of the NRS. The donors donated to the RRF with the presumption that 75%+ (I think) of their donations will be used to fund rosacea-related research.

[Brady Barrows]

Oh, yes Im sure we have them too. Iv just never been in a position to donate (Im not long out of university, poor excuse I know!).

If 15% is the ceiling on admin costs, then how do the NRS justify taking such a monumental chunk of the corn?

The NRS doesn't justify, they say something like this,

"The National Rosacea Society is a nonprofit organization that is tax exempt pursuant to Section 501(c)(3) of the Internal Revenue Code. Only 16 percent of our budget covers administration and fundraising, leaving the remaining 84 percent for program services including research grants, public awareness, public education and medical scientific education. Contributors may designate the use of their donations for specific programs, such as research grants, by noting so on their check." source >
http://rosacea.org/donate.html

However, the facts show in all the form 990s over the past seven years
that $3,368,592 of the total revenue of $5,569,108 was given to one independent contractor, Glendale Communications, Inc., of Barrington, IL. which is owned by Sam Huff, Director of the NRS.

To put this in perspective, think about the $18,000 the RRF raised through raising donations from rosaceans in just a short period of time, just a few months. What if $10,886 of the money was spent on one independent contractor, say, Pascoe Productions, and you found out that the owner of this company was David Pascoe? Do you think there would be a cry of,
'What is going on with the RRF?' You bet there would be a cry. Now, David Pascoe wouldn't do anything like that. And to put it in even further perspective, what if the RRF only spent 8% of the funds on research, which would be $1440, and the rest is spent elsewhere? That is what the NRS has been doing for the past seven years, except for the year 2004, which the percentage went up to over 15%, which if we continue the analogy would be $2707. Isn't it weird that hardly any cry of complaint is being done about the NRS? But if you factor in the entire seven years of which there is available records to check, the NRS only spent a little over 8% on rosacea research. Even if that percentage goes up in 2005 to 15% again or higher, the previous years negate the rise and it will level at about 9% or possibly 10%. Big deal. Oh, yeah, if you go to their donation page they will give you a button to wear. And they have the most prestigious list of medical doctors who have lined up on their medical advisory board who haven't checked one form 990 in the last seven years I would guess.

The old expression, figures don't lie, but liars figure is really what is going on here. Does anyone want to check these figures? Go to www.guidestar.org and type in National Rosacea Society in the search box. Download the form 990s and check yourself. Or you can go to this url which I have made it easy to do >

http://www.rosaceans.com/html/nrs.html

Scroll down to the form 990s I have to download. Point out my math errors. See if you can see how the NRS could possibly only spend 16% on adminsitration which is what their web site says and explain it to me. When you see the figure given in "Schedule A, Part II - Compensation Paid to the Five highest paid independent contractors for professional services," why is it every year there are hundreds of thousands of dollars going to Glendale Communications, Inc., owned by Sam Huff, Director of the NRS?

I'm not directing this to just you Bob, I am on a roll.

[drnase]

Remember that the NRS is a multipurpose organisation and funding medical research is only a small part of what it does, there is also education and other activities that it funds. The only way to criticise the allocated % of funding is to compare it to similar organisations.

The RRF and RRDi are different in that they have only one goal and that is to fund rosacea research.

The RRF did not donate money to the NRS, they helped fund a study. 100% of the money spent by the RRF will go to this study, not supporting the ways of the NRS. The donors donated to the RRF with the presumption that 75%+ (I think) of their donations will be used to fund rosacea-related research.



This gets extremely tricky and everyone could debate equally well on any side. My personal opinion is that the NRS is not doing its job adequately. Right from the start there was quite a bit of misleading -- the first time I donated I was clearly under the impression that this was for research.

They do have other jobs like patient awareness -- but it is not very good at all and it just directs them to Galderma pamphlets and lifetime television ads to the BLUSH number ...... back to Galderma.

The inherent problem here is that you CANNOT ever set up a focused aggressive Foundation that is run by the same Pharmaceutical company making four products for our disorder. The National Psoriasis foundation does not do this and they have gene banks and we will probably be getting half of our treatments off of their discoveries.

I am not a conspiracy person, but Brady has brought up a good point. That amount of money to Glendale Communications should be unlawful. The amount of money that the three executives received should be unlawful. Would everyone have donated to the NRS in hindsight knowing these things. I can almost guarantee that donations would have dropped by 50% to 75%.

This brings me up to the last question. Why has the RRF not distributed the brochures that clearly state Galderma and the NRS are not doing their jobs???????? Now that they are tied together, I guarantee that these beautiful, well designed, professionally written brochures will never see the light of day. If the RRF does release them then they are essentially biting the hand that is helping them. The RRF was designed to be for the people and by the people without any strings attached and no bed mates that you would have to answer to. No bed mates. They now have bedmates and cannot possibly distribute brochures that basically critique the NRS, Galderma, the sad state of research. This was a bad move on all counts ending up with a unworthy study.

Now will Rick jump in and a few others think that I am too harsh. For 7.5 years everyone needed to know and understand rosacea and what was going on. Rosacea did not need anymore "YES" men. For my few critics, do you know that I could have sat back for five years now eating bon bons while advertising on my site for almost any product I wanted. 4 banners on the first page for $800 to $1,000 for each banner per month and 6 banners on the second most visited web page for $500 each per month. Thats about $8,000 to $10,000 per month siting on my fanny, not answering tens of thousands of posts and emails. For those critics, in five years have you ever seen one blessed advertisement or banner. NO. NOT EVER.

Someone needs to keep rosacea real. Someone needs to speak up for all those that want to but are in too much pain. Someone needs to be blunt and straightforward so there is no confusion. This is never a popular position but I have taken it on. I do not see any others except Brady and Perry and a dozen others trying to shake people into waking up and making a difference.

Once again, in all major medical universities in the US you would never allow a Pharmaceutical company that treats rosacea to head up the only non-profit organization, and then take 50% of your money to advertise (for awareness :roll: ) which directs them right back to the metro triplets +1. And now we have lost our single best awareness campaign with our brochures. Please everyone email the RRF and ask them to at least look and read the brochures. Please send us a link to open up the brochure. You owe the supporters at least that. Follow that up with when are you going to send them out. They cant. They have made their beds now and cannot possibly distribute them. That goes against every cell in my body and should also wake up many others. This is extremely troubling even without all the extra chaos floating around these boards nowadays.

David Pascoe, President of the RRF, put a link on your Rosacea Support Page to show the one page flier and brochure so that everyone can see what could have made quite a difference.

[Warren]

I do believe that they are mis-managed but as of yet there is no actual proof. They do seem to produce very little with the US$500K-1M per year they have to spend (See [[Criticisms of the National Rosacea Society]]).

It is not true (at least anymore) that they are controlled by galderma and are an advertisement for metro*. You can see with this search that metrogel (http://rosaceagroup.org/search.cgi?q=metrogel&cmd=Search%21&form=extended&m=all&ps=10&fmt=long&wm=wrd&sp=1&sy=1&wf=2221&type=&GroupBySite=no&ul=rosacea.org) is not metioned on their site at all and galderma (http://rosaceagroup.org/search.cgi?q=galderma&cmd=Search%21&form=extended&m=all&ps=10&fmt=long&wm=wrd&sp=1&sy=1&wf=2221&type=&GroupBySite=no&ul=rosacea.org) is only listed on two pages. I have never seen their paper pamphlets or any other by-mail info, so I can not comment on that.

They have info about IPL/Lasers and this has been up for a long time now (but it took them too long to recognise these treatments) and they have many other sponsors apart from galderma (Candela Corporation, Galderma Laboratories, Intendis, Stiefel Laboratories, Inc., ). The National Psoriasis foundation also has many pharmacituical sponsors but then they also have a forum and people that you can talk to and they are actively trying to get things changed.

The NRS's biggest asset is their mailing list which in 95 (?) was over 20,000, and that is how they are able to solicit donations.

[Warren]

here is a relevant post made by David Pascoe to the [[Rosacea Support Group]]

From: "David Pascoe" <david.pascoe@...>
Date: Wed Oct 12, 2005 12:45 am
Subject: Re: Fwd: RRF Grant Details dpascoe_rrf
Offline Offline
Send Email Send Email
The money donated to the RRF will go to where it was promised. Keep
the costs down and give it all to directly fund rosacea research. So I
consider that the directors have discharged their duties correctly.

The funds will go straight to the grant awardees, via the NRS Grant
Scheme. Not only will none of it be used for other operations of the
NRS, but additionally, the RRF's funds are insufficient to cover the
amount required for the grant, and at this stage the NRS will make up
the difference.

You would have seen the list of re-known experts who have reviewed the
grant as well as been able to read the proposed abstract. The grant
scheme of the NRS is extensive and thorough. Additionally the RRF MAC
was able to provide some feedback and input to the researchers.

Whilst only one grant, the RRF has achieved a milestone that all of
the supporters can be proud of.

davidp.Msg:67417 (http://health.groups.yahoo.com/group/rosacea-support/message/76417)

[fanta]

Now I promised not to post more, but just wondered which milestone David talks about? are they funding another more innovative study now?

[Brady Barrows]

Think about these choices:

(1) Donate to the NRS and specify that the donation be used for rosacea research.

(2) Donate to the RRF who will then donate 75% of your donation to the NRS. The RRF has made this statement:

"We are committed to spending at least 75% of donations directly funding rosacea research."

(3) Donate to the RRDi who will not donate anything to the NRS as long as its current majority of spending is given to one private contractor, Glendale Communications, Inc., which is owned by the director of the NRS. Furthermore, the RRDi has pledged 90% of its funding will be used on rosacea research, leaving only 10% for running the organization.

And remember, the RRF hasn't disclosed how much money was actually sent to the NRS. No one knows as of this date, except the board of directors of the RRF and to whom they have disclosed the amount. Does anyone recall why the RRF was formed? Did it have anything to do with the fact that rosaceans were not very happy with the NRS and its operation?

[prryjones]

Hi all,
I understand the frustration presented on this thread.
I do agree with Brady, however, that there ARE options to consider.
IMO, lamenting over this useless study is like crying over spilled milk (I donated a considerable ammt. of money to the RRF, by the way. I resigned myself that it prob. was a waste the moment the fragmentation of the group).
My thinking is, so what if it didn't work the first time...we can try this endeavor again.
Lets focus and find some way that we can come together and make a difference.
I would surely be willing to spend again for a good grant, and Im sure there are others like me.
Perry

[Rick]

IIMO, lamenting over this useless study is like crying over spilled milk (I donated a considerable ammt. of money to the RRF, by the way. I resigned myself that it prob. was a waste the moment the fragmentation of the group).

Perry

Please specify exactly why you think it is "useless".

It was reviewed by 7 members of the NRS MAC with the highest scientific credentials. Nase, of course, says its all "well known", but read my post commenting on the papers he dispenses as evidence of his viewpoint.

I am not going to debate for the n-th time the general policies of the NRS, but I have interacted personally with 3 of the NRS MAC board members and have full faith in their competence and integrity. Please tell me exactly who on their MAC you do not trust to evaluate research grants.

Rick

[Rick]

Think about these choices:

(1) Donate to the NRS and specify that the donation be used for rosacea research.

(2) Donate to the RRF who will then donate 75% of your donation to the NRS. The RRF has made this statement:

"We are committed to spending at least 75% of donations directly funding rosacea research."

(3) Donate to the RRDi who will not donate anything to the NRS as long as its current majority of spending is given to one private contractor, Glendale Communications, Inc., which is owned by the director of the NRS. Furthermore, the RRDi has pledged 90% of its funding will be used on rosacea research, leaving only 10% for running the organization.

And remember, the RRF hasn't disclosed how much money was actually sent to the NRS. No one knows as of this date, except the board of directors of the RRF and to whom they have disclosed the amount. Does anyone recall why the RRF was formed? Did it have anything to do with the fact that rosaceans were not very happy with the NRS and its operation?

Brady,

With all due respect ... give us a break ...

NRS depensed 100K++ in Research grants this year.

RRF dispensed 18K in Reseach grants this year.

RRDi dispensed $0 in Research grants this year.

Not too surprising, given that, according to your website, RRDi hauled in $748.13, spent $688.80, leaving a grand total of $59.33 to fund leading-edge Reseach research grants. Plus, you have 1 person on your MAC.

Pls explain again why you expect us to send money to RRDi instead of NRS or RRF?

Rick

[fanta]

Rick, do all of us a favor! look yourself in the mirror and do something about your rosacea - its really waste if time discussing symbolic research leading nowhere. The NRS research is by most unpublished and not meeting any academic standards. Researchers granted money from the NRS look at previous research and see that there arent any serious requirements to their studies - so all we see are some reseachers delivering semi-finished results and not professional research. I think that doing research for the NRS is considered to be a walk-over by most researchers (with a little bit of cheating in some cases)

[drnase]

IIMO, lamenting over this useless study is like crying over spilled milk (I donated a considerable ammt. of money to the RRF, by the way. I resigned myself that it prob. was a waste the moment the fragmentation of the group).

Perry

Please specify exactly why you think it is "useless".

It was reviewed by 7 members of the NRS MAC with the highest scientific credentials. Nase, of course, says its all "well known", but read my post commenting on the papers he dispenses as evidence of his viewpoint.

I am not going to debate for the n-th time the general policies of the NRS, but I have interacted personally with 3 of the NRS MAC board members and have full faith in their competence and integrity. Please tell me exactly who on their MAC you do not trust to evaluate research grants.

Rick


Rick,

We really should institute a rule that you must post at least one helpful rosacea post to the group for every 50 attacks against everyone.

You of all people should know that you cannot read an abstract and get all the information they found and results. Most have a 65 to 80 word limit. What you failed to see, because it was not in the abstracts I supplied, but in the actual journals was that VEGF, Interleukins, inflammatory cytokines have all been measured as they are part of the wrinkle process and rejuvenation process. The information is in there, but you have to read the actual journal articles. All abstracts are directly relevant to the RRF grant and cover each variable already. So, they are just re-performing the same studies and looking at the same variables. So, I agree with Perry, the grant is not novel, does nothing to help guide us towards better treatments and thus is close to useless.

While I hate to admit this, Marc also has a point. All grants that have been performed the last 6 years should be published if they are up to the standard of medical peer review. A rough guestimate is that only 10% have passed this review process and 90% declined. This is not a standard that we should be happy with.

[Brady Barrows]

Think about these choices:

(1) Donate to the NRS and specify that the donation be used for rosacea research.

(2) Donate to the RRF who will then donate 75% of your donation to the NRS. The RRF has made this statement:

"We are committed to spending at least 75% of donations directly funding rosacea research."

(3) Donate to the RRDi who will not donate anything to the NRS as long as its current majority of spending is given to one private contractor, Glendale Communications, Inc., which is owned by the director of the NRS. Furthermore, the RRDi has pledged 90% of its funding will be used on rosacea research, leaving only 10% for running the organization.

And remember, the RRF hasn't disclosed how much money was actually sent to the NRS. No one knows as of this date, except the board of directors of the RRF and to whom they have disclosed the amount. Does anyone recall why the RRF was formed? Did it have anything to do with the fact that rosaceans were not very happy with the NRS and its operation?

Brady,

With all due respect ... give us a break ...

NRS depensed 100K++ in Research grants this year.

RRF dispensed 18K in Reseach grants this year.

RRDi dispensed $0 in Research grants this year.

Not too surprising, given that, according to your website, RRDi hauled in $748.13, spent $688.80, leaving a grand total of $59.33 to fund leading-edge Reseach research grants. Plus, you have 1 person on your MAC.

Pls explain again why you expect us to send money to RRDi instead of NRS or RRF?

Rick

Rick,
You of all people should be the one to criticize the NRS. However, since I am basically the lone ranger on this I would like to tell you a little story, in case you didn't know.

I have been the lone critic for the NRS since way back when, sometime around 2001. I sent off for the NRS' Form 990 for 2000 and tried to figure it out and discovered the expense, back then, to one private contractor, Sam Huff & Associates, Inc. of Barrington, IL, for 'Public Relations' in the amount of $744,075. No where on the NRS website does it list the board of directors. However on the Form 990 it listed Sam Huff as the director of the board. That year the NRS received $954,000 and spent only $94,000 on research grants. You do the math.

I shouted this to the world since then, following every year the NRS spent its funding. Very few listened. I had always dreamed that anyone could do a better job with nearly a million bucks than Sam Huff. And besides, who is Sam Huff? Is he a rosacean? Does he care about how rosaceans feel about how he uses nearly a million bucks of donations? I began discussing the possibility of forming a non profit organization for rosaceans and tried to rally support. See this url >

http://health.groups.yahoo.com/group/rosacea-support/message/45024

There are many other posts on this subject that I made but basically rosaceans in general could care less if the NRS spends a majority of its spending on one private contractor who also happens to be the director of the NRS.

However, I kept on alone pursuing my dream of a non profit organization run by rosaceans. I had checked in Massachusetts on forming a non profit and it is about as difficult as getting IRS approval as a 501 (c) (3) and costs a lot of money for the set up fee. When I moved to Hawaii it is a snap so I formed the RRDi in June of 2004.

Very few rosaceans cared whether I did this or not until one day, Warren Stuart, an energetic young man, decided to check up on what I was shouting. He actually took the time to read the Form 990 and verify what I have been saying for years and became involved. Warren organized a historic chat session attended by Geoffrey Nase, Chuck Young, and others. Chuck offered to pay for a lawyer to apply for the 501 (c) (3) approval. Geoffrey decided to go in with us. We were on a roll. Then, David Pascoe had some private emails with Geoffrey and Chuck and the next thing I learn is that I was out. Geoffrey, Chuck and David formed the RRF. It was a dark period for the RRDi. Then a few months later, you know the history. I am sure Geoffrey, Chuck and David all wish that they had left Geoffrey with the RRDi but you know what they say about hind site.

Now we have this thread, the RRF Grant, which has now become history.

What you should be aware of is the history shows that the RRF was formed simply because I have been the lone critic of the NRS. Very few step up to the plate and shout what I have been shouting to the rosacea world, that the NRS is spending the majority of its funding to one private contractor, now named Glendale Communications, Inc., which is owned by Sam Huff. The RRF has joined the NRS which is so ironic since the only reason it was formed was due to criticism of the NRS spending.

Why should you and other rosaceans donate to the RRDi? That is up to you and them. The RRDi website which you obviously have seen tells it all. Everything is up front, above board, legal and ethical. You can read the mission statement, the charter, the articles of incorporation, the by-laws, and the conflict of interest policy. (Try to find out how the RRF or the NRS operates and you will be one cool cat since they keep that one big mystery) The RRDi is still plugging along and we have volunteers who are now active. Warren is spending hours and hours on a new private forum for corporate members and a database that is so cool. Anyway, that's my history lesson for you and you can donate to whomever you choose as any rosacean can choose. The RRDi is simply an alternative for rosaceans who may want something other than the RRF or the NRS. This thread shows that both the RRF and the NRS have the same agenda, by announcing this statement:

"This grant will form part of the 2005 Grant Program as part of the National Rosacea Society's annual grant scheme. The Rosacea Research Foundation will be credited as the source of funding for this grant. "

And Rick, I am going to take a break now....

[ian]

I hate to cut in the arguements here, but as an RRF donor I'll admit I'm not incredibly thrilled with the topic of the study. Honestly, (and this is my opinion only) I was hoping for something non-laser and more genetics based. But, on the other hand, I am proud that the money was donated nearly 100% to research and they didn't have a heck of a lot of money regardless. (20K doesn't mean beans when researching diseases.) I'm also comforted by the names listed on the MAC, I see alot of names from folks whom I consider to be of the highest caliber.

Here's a thought - we know that right now as Rosaceas we have very little options when it comes to researching our condition. As Rick pointed out, there are 3 options: the NRS wastes too much money and has questionable financing, the RRDi doesn't have any money or MAC members, and the RRF is really the only viable choice at this moment. So really you only have one viable option, the RRF. Atleast you can be confident that your money will almost 100% go to research and furthering of treatment for the disease.

OR, if what Dr. Nase points out is correct (half of the future treatments will most likely come from psoriasis research), why not give your money to the Psoriasis foundations? If there are enough similarities in the disease process between the two, then why the heck not?

BTW - I'm not trying to get into any flame wars or arguements. Just trying to offer up another option for those who are not satisfied with the current situation.

[drnase]

I have to agree with Brady on this one. I would have never known about what was happening with the NRS, nor would I have gotten involved without him shouting at the top of his lungs for many moons.

In science and medicine, it is always those who first start the ball rolling or have enough forsight and determination that are known as the true blue pioneers. In that respect, Brady Barrows is that person.

One of my main concerns with the RRDI is I did not know how it would ever get up and running when too many chefs are in the kitchen -- the ideal behind every rosacea having a say is spot on, the reality is death. We can rarely get 6 people in a room who have decades of experience with setting up foundations and grants without massive migraines.

However, in no way should the RRF ever have joined the NRS. That will be the end of the RRF. The entitiy was about change in rosacea mindsets and treatment. They also have no MAC member (except Dr. Drummond) who has any experience with grant review.

I can almost guarantee that every rosacea sufferer that donated to the RRF, including myself, after seeing the breathtaking brochures, would have unanimously told the RRF to fund the release of those brochures to every derm, doctor and pharmaceutical company. That would have resulted in the greatest change and advancement. Now they cant release it because they are tied in with NRS -- so they cant critique the state of rosacea. That is exactly why they should have stayed independent.

Maybe if David spent a little less time exacting his revenge on me and focusing on the RRF's activities, his mind would have been clearer. I do believe he owes the RRF supporters an explanation. I also believe that he must release the brochures and fliers to every supporter to analyze for themselves. If not the RRF will fold and probably has already.

[prryjones]

Please, please, lets spend our money towards first trying to elucidate the eitiology of rosacea, rather than evaluating the effectiveness of a single type of tx.
Use the various types of microscopy, evaluate and assay biopsies....this is my opinion is a good place to start in discovering the cause(s) of rosacea.
Once the eitiology is found, much easier to work towards more effective txs.
A shining example would be the rather recent dev. of the monoclonal abs as a result of the increase in knowledge concerning the eitiology of arthritis.

[Brady Barrows]

I hate to cut in the arguements here, but as an RRF donor I'll admit I'm not incredibly thrilled with the topic of the study. Honestly, (and this is my opinion only) I was hoping for something non-laser and more genetics based. But, on the other hand, I am proud that the money was donated nearly 100% to research and they didn't have a heck of a lot of money regardless. (20K doesn't mean beans when researching diseases.) I'm also comforted by the names listed on the MAC, I see alot of names from folks whom I consider to be of the highest caliber.

Here's a thought - we know that right now as Rosaceas we have very little options when it comes to researching our condition. As Rick pointed out, there are 3 options: the NRS wastes too much money and has questionable financing, the RRDi doesn't have any money or MAC members, and the RRF is really the only viable choice at this moment. So really you only have one viable option, the RRF. Atleast you can be confident that your money will almost 100% go to research and furthering of treatment for the disease.

OR, if what Dr. Nase points out is correct (half of the future treatments will most likely come from psoriasis research), why not give your money to the Psoriasis foundations? If there are enough similarities in the disease process between the two, then why the heck not?

BTW - I'm not trying to get into any flame wars or arguements. Just trying to offer up another option for those who are not satisfied with the current situation.

Ian,
On the NRS website it makes this statement:

"Contributors may designate the use of their donations for specific programs, such as research grants, by noting so on their check."

Rosaceans have had this option all along since the NRS began. By donating to the RRF you are simply sending money to the NRS with the possibility of 25% taken out to run the RRF. By sending the donation to the NRS directly and specifying that it be used in rosacea research, in theory, 100% would be used for this purpose.

The RRDi has one volunteer MAC member who is a clinical researcher with a Ph.D. in biochemistry and has published in scientific journals. His name is Dr. Andrzej Wedrychowski. He has graciously volunteered to help us with advice.

While the RRDi doesn't have any money, we are still here, and once we receive approval as a 501 (c) (3) non profit organization we will be legally recognized as a tax deductable organization. The RRF still hasn't received this approval yet, so we are both in that same boat. Waiting.

By the way, do you think you could have this topic at r-s right now? And you know they are reading every post here with a fine tooth comb, looking for just one out of line statement, but so far they can't deny any of this.

[Brady Barrows]

I have to agree with Brady on this one. I would have never known about what was happening with the NRS, nor would I have gotten involved without him shouting at the top of his lungs for many moons.

In science and medicine, it is always those who first start the ball rolling or have enough forsight and determination that are known as the true blue pioneers. In that respect, Brady Barrows is that person.

One of my main concerns with the RRDI is I did not know how it would ever get up and running when too many chefs are in the kitchen -- the ideal behind every rosacea having a say is spot on, the reality is death. We can rarely get 6 people in a room who have decades of experience with setting up foundations and grants without massive migraines.

However, in no way should the RRF ever have joined the NRS. That will be the end of the RRF. The entitiy was about change in rosacea mindsets and treatment. They also have no MAC member (except Dr. Drummond) who has any experience with grant review.

I can almost guarantee that every rosacea sufferer that donated to the RRF, including myself, after seeing the breathtaking brochures, would have unanimously told the RRF to fund the release of those brochures to every derm, doctor and pharmaceutical company. That would have resulted in the greatest change and advancement. Now they cant release it because they are tied in with NRS -- so they cant critique the state of rosacea. That is exactly why they should have stayed independent.

Maybe if David spent a little less time exacting his revenge on me and focusing on the RRF's activities, his mind would have been clearer. I do believe he owes the RRF supporters an explanation. I also believe that he must release the brochures and fliers to every supporter to analyze for themselves. If not the RRF will fold and probably has already.

Geoffrey,
I gave this a great deal of thought on how should the RRDi work. How do you let rosaceans have a say and not have chaos? Simple concept:

Members of the corporation are made up of a majority of rosaceans (which the board of directors make sure this is done) who have voting rights as corporate members on who sits on the board of directors.

The Board of Directors make all decisions and are final.

The Medical Advisory Committee ADVISES the board of directors, but the Board of Directors have the final say.

The Board of Directors will listen to rosaceans' concerns and take this into consideration when making decisions. A private forum for corporate members is provided for this purpose.

The mission statement, the articles of incorporporation, the by-laws, and the conflict of interest policy all come together to provide the safeguards I have just outlined above. There are many other safeguards, too numerous to mention, that provides the board of directors the authority to make decisions that are final. If rosaceans don't like the decisions there is an election process that can remove the board and put in who the corporate members want.

Now, try to figure out how the NRS or the RRF works. Basically they have a board of directors who make the final decisions which are absolute. No rosacean can do anything about these decisions since the board members are closed and no process is allowed to have any say on who sits on the board of directors.

There is an alternative for rosaceans, the RRDi. This has taken years to develope and will probably take a lot more time, but it is slowly working.
And thanks for your gracious comment, but I can't do this alone and while I have done about 90% of the work so far, Warren is taking over areas I am not capable of doing and his percentage of volunteer work is probably going to exceed mine. There are a handful of other volunteers we will be delegating responsibility to very soon and the RRDi website will be state of the art, very cool and the place rosaceans will want to be.

[drnase]

Please, please, lets spend our money towards first trying to elucidate the eitiology of rosacea, rather than evaluating the effectiveness of a single type of tx.
Use the various types of microscopy, evaluate and assay biopsies....this is my opinion is a good place to start in discovering the cause(s) of rosacea.
Once the eitiology is found, much easier to work towards more effective txs.
A shining example would be the rather recent dev. of the monoclonal abs as a result of the increase in knowledge concerning the eitiology of arthritis.



Perry,

That is one of the two grants I received after I resigned. It was from a biotechnology company who wanted 20K to look at the skin in vivo with a confocal microscope and then take out biopsies and stain for 35+ variables, nerves and vasoactive factors. I forwarded it to Dave P., but it obviously was discarded. I thought it was a grade A study that would identify some factors and help rule out a ton of others -- both very helpful in elucidating the underlying etiology.

[Bob Bear]

Geoffrey,

Do you know if that study ever got its funding? It would be a shame for something like that to go up in smoke over.

[Brady Barrows]

Please, please, lets spend our money towards first trying to elucidate the eitiology of rosacea, rather than evaluating the effectiveness of a single type of tx.
Use the various types of microscopy, evaluate and assay biopsies....this is my opinion is a good place to start in discovering the cause(s) of rosacea.
Once the eitiology is found, much easier to work towards more effective txs.
A shining example would be the rather recent dev. of the monoclonal abs as a result of the increase in knowledge concerning the eitiology of arthritis.

Perry,
You could ask this same request to the RRF, the NRS or have a say as a corporate member in voting who sits on the board of directors for the RRDi. The board of directors will listen to corporate members of the RRDi because the board is accountable to the corporate members when election time comes up. Membership is free and is not dependent upon whether you make a donation or not. We do have requirements to be a corporate member, but donating is not one of them. To join >

http://www.irosacea.org/html/join.html

[drnase]

Geoffrey,

Do you know if that study ever got its funding? It would be a shame for something like that to go up in smoke over.


Bob,

I dont think David Pascoe forwarded it to anyone. He did not forward the one by Fujisawa for Dapsone cream for rosacea which was the second grant I sent him.