Dear VSI Members, Friends, and Donors,

I came to you in December with a heartfelt message regarding VSI’s future. I wasn’t sure how it would be received, but felt it was important to be forthcoming, at least giving you, the heart and soul of the organization, the chance to make a difference.

Where Do We Stand Compared to 2017?

42% increase in the total number of donors
27% increase in total contribution amount
272% increase in first-time donors
11.5% decrease in average donation amount

We are indeed blessed with some of the greatest members any organization could have.

We’ve received so many messages of support, like the one below:

Not unexpectedly, even as I genuinely related our inability to meet the overwhelming demands with the current level of funding, we received notes from a few explaining our failure to satisfy their specific needs.

As I’ve written so many times:
The unmet needs of our community are great.
Only with the support of the community we serve, can we turn this around.

We’ve unquestionably had a strong start, but as the message begins to fade from the memories, so do the contributions.

The reality is that this organization has been running on 50% funding and 50% passion. Passion, like faith, is powerful, but at the end of the day, an organization cannot thrive, succeed, or grow without adequate funding. VSI continues to be underfunded.

VSI’s mission has always been to operate with the utmost of integrity, and provide legitimate, unbiased support to the entire vitiligo community without regard to ability to pay. We’ve held on to the faith that those we’ve supported over the years would in time give back. Now is the time.

We’ve looked adversity squarely in the face, in the toughest of times….
without comprising our integrity or standards.

Our faith is being tested.
VSI will either emerge stronger and better prepared to grow
and meet the demands of this ever growing community,
or….
We will go the way of so many of our predecessors, leaving social media and blogs to fill the void.

Sincerely,

Jackie Gardner
Executive Director

Starting a Local Vitiligo
Support Group

There is nothing like the opportunity of meeting other people living with vitiligo and the chance to share support and experiences in person. Even those in a very supportive family or environment describe feelings of sadness, confusion, and isolation. They just want to meet and talk with others who’ve been where they are and understand.

Because there are so few established vitiligo support groups, VSI frequently receives requests for information on how to start a group. To further complicate matters, many people who contact VSI have been unable to find a local dermatologist who is particularly supportive of vitiligo treatments, which can be limiting with regard to support group assistance. However, with or without medical support, you can still have a successful support group!

While VSI does not currently have the capacity to oversee local support groups, we are happy to share the following information and guidelines for those who are interested.

How to Start a Local Vitiligo Support Group

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Camp Discovery 2019!

The American Academy of Dermatology’s (AAD) Camp Discovery program is for children ages 8-16 who have a chronic skin disease. Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions having fun and participating in activities such as swimming, horseback riding, arts and crafts and many more. There is no fee to attend, all costs including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals.

• All children must be referred by their dermatologist. Parents can copy the Camper Referral form and take it to their dermatologist. Submission Deadline: April 8, 2019 or when space is full
  

• There is no fee to attend, all costs including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals.
  

Click on the dates below for each camp for specific information about that camp.

June 16-21, 2019: Crosslake, Minnesota
June 30- July 5, 2019: Crosslake, Minnesota
August 4-9, 2019: Burton, Texas
August 10-16, 2019: Millville, Pennsylvania
August 11-17, 2019: Andover, Connecticut (local campers only)
August 26-30, 2019: Gig Harbor, Washington (local campers only)

For more information about attending or volunteering:

Visit www.campdiscovery.org, or 
Contact Janine Mueller at 847-240-1737, or [email protected]

Calling all Medicare Vitiligo Patients!

VSI regularly hears from patients from all over the United States who have been denied insurance coverage for their vitiligo treatment. VSI has been fighting this battle on a national level for several years. While we are definitely making progress, it’s been a slow road.

Part of the problem is that currently there is no accepted standard for coverage of vitiligo treatments. Each company has their own policies and guidelines, many times based on outdated and incorrect information.

What most people may not realize is just how much private insurance coverage can be affected by Medicare policies. Over 55 million Americans are now covered by Medicare or Medicare Advantage, making it the nation’s largest health insurance program. Consequently, many, if not most, insurance providers establish their baseline standards and procedures to follow the Medicare model.

Medicare has agreed to meet with us – but requires that we bring Medicare letters of denial for a vitiligo treatment.

If you are reading this newsletter and you, or someone you know, was denied coverage for a vitiligo treatment by Medicare, please contact VSI immediately. You could help make a difference for future insurance coverage for ALL vitiligo patients! Click Here to Contact VSI

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What's On Your Mind?

Q. Which is better, excimer laser or NB-UVB?

I am searching for a doctor who is able to prescribe light treatments for me, but I’m trying to understand the difference between narrow band UVB and excimer laser. Is one better than the other?

1. There are various factors to consider when determining which therapy would be more effective.

Excimer laser uses a wavelength similar to NB-UVB, but delivers a targeted, narrow beam. It is very effective, but because of the size of the beam it is most often used to treat very small areas of depigmentation. Some doctors will begin with laser therapy for patients who have only a couple of very small areas of depigmentation. However, laser is more typically used for very small spots remaining after NB-UVB treatment.

NB-UVB phototherapy is now the gold standard light treatment for vitiligo, and the initial treatment of choice for patients with vitiligo involving greater than 10 percent of the body surface area (BSA).  A larger NB-UVB light unit reduces treatment time by treating larger areas in a single exposure. It can also catch areas in the process of depigmenting before they become noticeable.

Another bonus of NB-UVB therapy is that when used on the full body, research has shown it to be effective at stabilizing active vitiligo. So, not only are you regaining pigment, but you may also be halting disease progression in other areas.

Medical News Updates

Highlights of recently-published medical
articles on vitiligo and its treatments

The Mystery of Recurrent Pigment Loss

Vitiligo research has seemingly snowballed in recent years, revealing a great deal of information on the autoimmune and inflammatory processes and pathways involved with the targeted attack and destruction of melanocytes. This is encouraging for many reasons, not the least of which is the promise of new and better treatments.

One of vitiligo’s greatest mysteries, as well as frustrations, has been why pigment that has been regained with treatment remains susceptible to relapse, even many months or years later. Especially intriguing to researchers is why these recurrences often appear in the exact places the vitiligo was previously located. They asked, “Why? What would be so special about a small lesion on a very specific site that would make it once again depigment years after successful repigmentation?”

They now think they know why. The answer goes back to the original attack by the autoreactive T cells.

Autoreactive:
Pertaining to an immune response directed against the body's own tissues.

Apparently, these cells not only kill the melanocytes, they leave behind special memory cells called tissue resident memory (trm) T cells, which have been found in high concentrations in skin biopsies of vitiligo patients. This autoimmune memory component has now been identified as a key culprit in recurrent depigmentation.

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Research & Clinical Trials

New Jak Inhibitor Study
New York City

New Online Depigmentation Survey

Research Study in New York City

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