Contact Us
Online: www.VitiligoSupport.org
Email: Contact Us
Postal Mail Address
Vitiligo Support International
P.O. Box 3565
Lynchburg Va 24503
Phone: (434) 326-5380
VSI Medical and Scientific Advisory Committee
Committee Chair
Pearl E. Grimes, M.D.
Ted A. Grossbart, Ph.D.
Sancy A. Leachman, M.D.
I. Caroline Le Poole, Ph.D.
Mauro Picardo, M.D.
Nanette B. Silverberg, M.D.
Richard A. Spritz, M.D.
Alain Taieb, M.D., Ph.D.
Wiete Westerhof, M.D., Ph.D
Message from the Executive Director
Dear VSI Members, Friends, and Donors,
For many, the new year brings thoughts of resolutions of change and improvement, and saying goodbye to problems and difficulties of the past. But the reality is that change is rarely easy. As motivation wanes, old habits creep in.
In Consideration of VSI’s Future,
This Message is a bit Longer Than Usual.
We Respectfully Request Your Attention.
This Message is a bit Longer Than Usual.
We Respectfully Request Your Attention.
In December, we sent each of you our year-end letter outlining some of the challenges VSI has been facing. We explained that since COVID-19, we’ve been walking a tight-rope between an ongoing decline in donations and a record number of requests for services.
It’s Not Just VSI. Research now documents this situation to be an ongoing trend affecting a great number of smaller non-profit organizations.
By sharing this information, our hope was that our members who have relied on VSI for information and support all these years would understand the gravity of the situation, and be motivated to step up and offer the financial support needed to make a difference in VSI’s future.
Campaign Update: The initial response was encouraging. We have received 157 contributions, which is a 19% increase over 2022. However, those 157 donations only resulted in a 17% increase in actual dollars over 2022, which unfortunately, is not enough to make up for a 3-year decline.
If VSI Closed, Would it Make a Difference? Whether or not you still personally rely on VSI as you once did, if vitiligo has impacted your life in any way, we feel it important that you understand VSI’s role in the vitiligo community and the potential consequences of the loss.
What Exactly IS the Role of a
Patient Advocacy Organization?
There is a Fundamental Difference between organizations primarily comprised of and run by patients, and organizations primarily comprised of and run by physicians.
FIRST AND FOREMOST:
PATIENT GROUPS REPRESENT THE PATIENT
PATIENT GROUPS REPRESENT THE PATIENT
Patient Advocacy Organizations not only provide patient education and resources, it is their primary purpose to serve and support patients and their families and to make sure the voice of the patient is heard and understood.
Do not misunderstand, both of these types of organizations are critically important! Consequently, it is critically important that both be adequately funded in order to fulfill their purpose.
There should be a symbiotic relationship between the two.
Physician-run organizations depend on the patient-run organizations to help them understand the day-to-day life and struggles of the average patient; the heavy emotional impact and life-changing repercussions of the disease; what patients really want and need; how they think; what they are willing, or not willing to invest or participate in, and why.
Physician-run organizations attract the attention and funding of the pharmaceutical companies. Why is that? Because many of these physicians are also the scientists in the labs working to better understand the pathology of the disease and to develop better treatments.
On the Other Hand …
Patient-Run Organizations Depend on the
Financial Support of the Patients They Represent and Serve.
Patient-Run Organizations Depend on the
Financial Support of the Patients They Represent and Serve.
For over 20 years, VSI’s efforts have been dedicated solely to representing and conveying the heart and voice of vitiligo patients to the professional stakeholders. We understand the patients because we are in the trenches WITH the patients.
We understand why those first diagnosed
would give anything in the world to obtain a treatment.
We also understand why many others have elected to “embrace” and not treat.
There is a Reason for Each of These Decisions.
It is our job to understand and convey the logic of these messages to the scientists who have dedicated their lives to developing better treatments, and to the pharmaceutical companies considering the investment of hundreds of thousands of their dollars to fund the research.
What Sets VSI Apart?
Our long-standing professionalism, combined with our knowledge, understanding, and ability to convey and represent the voice of the patient, by virtue of the ongoing honor of being entrusted with the first-hand stories from thousands of vitiligo patients from all races, creeds, and walks of life.
Bottom Line:
We Must Work Together.
Underfunded Representation = Ineffective Representation.
Your Choice.
Sincerely,
Jackie Gardner
Executive Director
Congratulations VSI:
Awarded 2024 Gold Seal of Transparency!
With a database of more than 1.8 million IRS-recognized organizations,
GuideStar is the most complete source of information about U.S. charities.
Search Vitiligo on Guidestar.
What’s On Your Mind?
Q. I have Hashimoto’s thyroid disease and have been taking a compounded medication for it for several years.
A couple of months ago my dermatologist recommended that I start taking an antioxidant supplement called alpha-lipoic acid (ALA) to my daily meds.
I looked it up before I started taking it and it seems to have a lot of health benefits that would be good for vitiligo. However, on my most recent lab work from my endocrinologist, my thyroid levels were off. For some reason my T3 seems to have dropped quite a bit. I am now wondering if the ALA could be responsible.
A.
As it turns out, your hunch may be correct. Alpha-lipoic acid is frequently prescribed by dermatologists for vitiligo due to a wide variety of beneficial properties. It may be most well known as an antioxidant that can help reduce vitiligo-associated oxidative stress, as well as helping to improve the results of NB-UVB phototherapy. It is also prescribed for other autoimmune disorders due to immunomodulatory effects on the immune system.
However, there is a caveat for those also taking thyroid medications. Apparently, if ALA is taken too close to the time the thyroid meds are taken, it can affect the conversion of T4 into T3, resulting in a decrease in T3. Many times this effect can be ameliorated by taking the two supplements at least 4 hours apart.
Because ALA has so many beneficial qualities, it might be a good idea to discuss the situation with your endocrinologist to see if you can find a workable solution enabling you to take both.
Research & Clinical Trials
Treatment Study
Recruiting in 17 US States
& 14 Countries
Multi-Center Phase 3 Clinical Trial
Evaluating the Oral Jak Inhibitor, Ritlecitinib,
for the Treatment of Adults with Vitiligo.
This is a 52 week, Phase 3 randomized, double-blind, placebo-controlled, multi-center study, investigating the efficacy, safety, and tolerability of ritlecitinib, an oral JAK3 inhibitor, in adults with active or stable, non- segmental vitiligo.
Research shows that when the JAK signaling pathway becomes over- active, it drives the inflammation associated with triggering the onset of, and subsequent progression of vitiligo. The goal of ritlecitinib, a nonsteroidal, anti-inflammatory, once daily oral capsule, is to reduce or block this process.
Participants will be in the study for about 1 year and attend about 11 study visits.
Key Inclusion Criteria
- Must have vitiligo (active or stable) for at least 3 months
- Participants 18 years of age or over are eligible.
- Adolescents ages 12 to 18 years of age are eligible only in countries approved by the local IRB/EC and regulatory health authority.
- Adolescent participants are not eligible in the USA.
Recruiting Study Locations
New York, New York
Mount Sinai Dermatology
5 East 98th St. 5th Floor
New York, NY 10029
Sharlene Martin
Phone: 212-241 6033
Email: [email protected]
Click Here for Complete List of Sites and Contacts
Afamelanotide Treatment Study
DO YOU HAVE GENERALIZED VITILIGO
ON THE FACE AND BODY (for at least 3 months)?
Study Information:
An investigational therapy called afamelanotide is being evaluated as a treatment for vitiligo patients with darker skin types.
STUDY DURATION: 12 months (Eligibility assessment + 5 months of treatment + 6 months of follow-up)
TWO STUDY TREATMENT GROUPS:
A. Narrowband ultraviolet B (NB-UVB) in combination with afamelanotide
B. NB-UVB alone
You may qualify if you:
- Are aged 12 or more
- Have medium to dark skin
- Do not have extensive white hair in your vitiligo patches
- Do not have a history of melanoma, lentigo maligna or do not have any
malignant (cancerous) skin lesions - Do not have liver diseases
- Are not pregnant or breastfeeding
Participation involves:
- NB-UVB light treatment twice per week for 20 weeks (all participants)
- Receiving an implant of afamelanotide every 3 weeks for 20 weeks (50%
of participants) - Travel costs may be reimbursed
EMAIL FOR MORE INFORMATION AND RECRUITING SITES LOCATION:
[email protected]
Shop Online and Earn Funding for VSI
Online Shopping Can Benefit VSI!
Support VSI with Ebay!
Do you sell items on eBay, or want to hold an online garage sale? If so, consider donating a percentage of your proceeds to VSI through eBay’s Giving Works program! It’s easy – when you list an item through a Giving Works listing, choose to send 10-100% of the final sale price to VSI. Your listing will have a special placement and designation. You’ll receive a proportional fee credit from eBay, and will also receive a tax donation receipt when the donation is deducted from your funds received. It’s a great opportunity to make some money for yourself and for VSI, so clean out those closets and garages and get selling! To Learn About eBay for Charity: Click here
Tobi Cares Donation Program
Tobi is an online women’s clothing design label that brings LA style from its design studio direct to its online clothing store at tobi.com. Go to Tobi Cares and sign up for VSI to receive 1% of your purchase amount.
IGIVE SHOPPING
iGive.com offers access to free shipping deals and exclusive coupons, on top of the great deals you’ll find every day through its network of 1,000+ stores, including Pottery Barn, REI, Staples, Petco, Expedia, Best Buy, QVC and many more. Best of all, up to 26% of your purchase at each store is donated to VSI at no cost to you! Let friends and family know so they can support VSI, too. Click register for iGive to get started today, and download the iGive button to automatically benefit VSI whenever you go to an included store. You can also raise a penny per search through iGive’s search engine, isearchigive.com.
GOODSEARCH SHOPPING AND DINING!
GoodSearch and Goodshop, like iGive, offers coupons, discounts, and donations to VSI through its network of over 5,000 stores. Just click the link above to get the savings started and the donations flowing!