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VSI Spring Newsletter from Jackie Gardner - Executive Director

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To view this in your browser click Spring Newsletter.


Generously sponsored by:

Click Above for Information on Dermablend Cosmetics Click Here


Is your glass half empty, or half full?

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With your help, we are filling more glasses each day, and we're proud of it!

VSI began with a handful of vitiligo patients in search of accurate information and a caring doctor to prescribe a viable treatment.

Today we are 50,000 strong, joining hearts, minds and energy around the world. Our members come to us in need of information- We fill their glass, and they turn- and fill their neighbor's glass.

Our newsletters are provided at no charge to keep our members informed of current research, meetings, clinical trials and treatments as well as to share member stories. We want to take this opportunity to thank our Supporting Members, Donors and Sponsors for answering the call to fill glasses.

Coffee Cup Grab a cup of coffee and sit back while we fill you in on all that's transpired since the last newsletter.



In This Issue

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WEBSITE NEWS

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Hopefully by now you have logged on to www.vitiligosupport.org and seen the recent changes. There are still a few kinks here and there we are working out, but the transition seemed to go fairly smoothly.

I do have a recommendation for our newer members. If you will log on, then select "Website Tips" from the menu on the left, you will find a tutorial that should answer most any question you have regarding the actual website. The topics covered there are:

How to Post, Reply, and Edit
Message Approvals
All Message Boards
Email/Preferences
Products and Services relating to Vitiligo
Vitiligo Library and Store
Doctors who treat Vitiligo
Searching Old Posts
Advocacy
Supporting VSI
Terms of Service
Member Registries
Member Chat
Who's Online
Photo Galleries


CONTEST!

Log on and go to the Main Message Board for information on how to win a Supporting Membership!


RESEARCH

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Vitiligo Skin Pigment Cell Transplantation Study
W. Lim, M.D., Professor and Director
Multicultural Dermatology Center, Henry Ford Hospital

Individuals with vitiligo develop milk-white patches of skin due to loss of the skin pigment cells (melanocytes) in these areas. Skin transplantation can be a very effective treatment option for vitiligo patients with stable disease who have not experienced success from light treatments or application of medicated creams. One particular skin transplantation technique, the melanocyte-keratinocyte transplantation procedure (MKTP) has been used successfully in Sweden, India and Saudi Arabia for more than 13 years.

In the MKTP, melanocytes are taken from a person's normal skin, made into a gel, and then transferred to the vitiligo patches. The melanocytes grow and multiply in this new location and the skin color is restored. Because a gel is transferred instead of a piece of skin, as is done in many other skin transplantation procedures, this procedure can be performed on an outpatient basis and patients can resume most normal activities immediately after the procedure. We are performing this procedure in the Henry Ford Hospital (HFH) Dermatology Clinic in a clinical trial in order to see if we can achieve the same success that has been experienced in other parts of the world using this technique. We have performed 15 procedures so far and early results are encouraging. This procedure is only appropriate for patients whose vitiligo has not worsened in the past six months. People who develop vitiligo or thick scars (keloids) on parts of the skin which are scratched or cut should not undergo this procedure. Study participants would have to be able to come to the HFH dermatology clinic in Detroit, Michigan 8 times in 7 months. Further study requirements can be discussed by contacting the study doctors.

For more information please contact Dr. Richard Huggins at 313-916-6964 or rhuggin1@hfhs.org


Detroit-Area Vitiligo Genetics Study
W. Lim, M.D., Professor and Director,
Multicultural Dermatology Center, Henry Ford Hospital

Though there are many different treatments available for vitiligo, there are none that are effective in all patients. We are performing a study comparing the genes of patients with vitiligo to those without the disorder in order to uncover targets for new treatments.

We will be collecting blood samples from vitiligo patients and healthy adults without the disease. We will perform testing to evaluate the genes that are different between the 2 groups as well as determining what these genes do. We are seeking 500 volunteers with vitiligo and 500 healthy controls for this important study. Participants would have to come to the Henry Ford Hospital Dermatology Clinic in Detroit, Michigan for a single visit and they will be compensated for their time.

For more information please contact Dr. Richard Huggins at 313-916-6964 or rhuggin1@hfhs.org.


Call for Patients: Vogt-Koyanagi-Harada Disease (VKH)

We are hoping to start a new genetic study specifically on Vogt-Koyanagi-Harada Disease, a rare autoimmune syndrome characterized by uveitis, meningitis, dysacusis, alopecia, poliosis, and vitiligo. If you have VKH disease, please email me as soon as possible,

Thank you,

Richard A. Spritz, M.D.
Tel 303-724-3107
FAX 303-724-3100
Email richard.spritz@ucdenver.edu


Vitiligo Genetic Study: Dr Richard Spritz

By now many of you have read, heard about, or participated in Dr Richard Spritz's vitiligo genetic research. Below is his most recent report.

If you have not participated, I encourage you to do so here and now. This costs nothing and you can participate without leaving your home.

From Dr Spritz:
The international VitGene consortium project, aiming to identify susceptibility genes for generalized vitiligo is the largest vitiligo research study ever undertaken. Funded by a major grant from the U.S. National Institutes of Health, this "genomewide association" study offers the best hope to discover the true biology underlying vitiligo, and thus to open up paths to new treatments and cures. The project will take 4 years, and will have three phases.

Phase 1, taking place now, is the initial genome-wide screening stage, with 1500 Caucasian patients and 1500 unaffected peoples ("controls") from the USA, Canada, and United Kingdom (UK).

Phase 2, (sample collection is going on now), will follow up promising results from the Phase 1 in ~2750 different Caucasian patients and controls from the USA, UK, and continental Europe, as well as in ~400 additional Caucasian vitiligo families (patients and relatives).

Phase 3, (sample collection going on now) will test genes proved out in the first phases in non-Caucasian groups, including USA and Colombia Hispanic/Latino, African-Americans and Nigerian blacks, middle-eastern Arabs, Indians and Pakistanis, and Asians. Currently, VitGene includes 20 countries (USA, Canada, Colombia, UK, Belgium, Holland, France, Italy, Spain, Germany, Czech Republic, Sweden, Jordan, Saudi Arabia, Bahrein, Nigeria, Pakistan, Japan, S. Korea, and Taiwan), with additional sites being considered.

Thanks to the many of you who have sent in study entry questionnaires. We very much appreciate your support; We still need additional samples from BOTH patients and unrelated, unaffected 'controls'. We especially need minority study participants! If you haven't sent in a questionnaire, Click here to Participate. (you must save this to your local computer to fill out, and return via mail or email to richard.spritz@ucdenver.edu).

YOU MUST PROVIDE FULL CONTACT INFORMATION, INCLUDING NAME, EMAIL, MAILING ADDRESS, AND TELEPHONE NUMBER. IF WE CANNOT CONTACT YOU, YOUR QUESTIONNAIRE IS USELESS.

Please, just one questionnaire per family; if you already sent in a questionnaire, please do not ask others in your family to send in additional questionnaires. If you are not in one of the countries listed above, please do not send in a questionnaire.

If you have already sent in a questionnaire and received a saliva DNA kit or kits, PLEASE SEND THEM BACK , and PLEASE make sure all paperwork is filled out and signed. Likewise, if you once sent in a questionnaire but received no response at all (probably because you gave insufficient contact information or moved), please send in a new questionnaire, noting that you sent one in previously. In a very real sense, this is YOUR research; we cannot do this without you.

Thanks again.

Richard A. Spritz, MD
Professor and Director
Human Medical Genetics Program
University of Colorado Denver
Aurora, CO 80045 USA


Dr Caroline LePoole Wins $1.7 million Grant to Study Immune System's Role in Vitiligo and Melanoma

Those of you who attended our conference in San Antonio last summer will remember one of our prominent speakers and member of VSI's Medical and Scientific Advisory Committee, Dr Caroline LePoole. Dr LePoole was recently awarded a grant to study a new way to treat vitiligo which she thinks will essentially prevent the immune response that causes the pigment loss.

MAYWOOD, Ill. - About 1 million Americans suffer a skin disorder called vitiligo, which causes unsightly white patches on the face, hands and other parts of the body.

A Loyola University Hospital researcher has won a five-year, $1.7 million federal grant to investigate a new way to treat vitiligo. This research also could point the way to new treatments for melanoma, the deadliest form of skin cancer.

Vitiligo appears to be an auto-immune disease, in which the immune system goes into overdrive and kills pigment cells, which give skin its color. Loyola researcher Caroline Le Poole, PhD, is studying how to stop vitiligo. The goal is to adjust the immune system so that it stops attacking pigment cells. Conversely, melanoma would be treated by revving up the immune system to attack malignant pigment cells.

None of the existing treatments prevent vitiligo from progressing. But the approach Le Poole is studying potentially could stop vitiligo in its tracks.

In people who are susceptible to vitiligo, an injury to the skin, such as sunburn, can trigger pigment cells to generate stress proteins. Immune cells absorb these proteins and, in turn, signal killer T cells to destroy pigment cells.

Le Poole hopes to throw a wrench into this overactive immune response. In collaboration with Assay Designs, Inc. of Ann Arbor, Mi., she is developing blockers that would stop immune cells from absorbing stress hormones and triggering the immune response.

"An active immune response can be bad for vitiligo patients, but good for melanoma patients," Le Poole said. "We hope to be able to adjust the immune system in ways that would benefit both groups of patients."

You may view this video here: Dr LePoole discusses the grant


ADVOCACY

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VSI Executive Director Jackie Gardner attended Skin Disease Research Day (SDRD) Feb 4-5 in Washington, DC.

SDRD is a collaboration between the American Academy of Dermatology Association (AADA), the Society for Investigative Dermatology (SID) and the Coalition of Skin Diseases (CSD) who work to raise congressional awareness about the burden of skin disease and to promote support of medical research. This event joins medical professionals, researchers, advocacy groups and patients from across the country to represent a wide-variety of skin diseases.

Preparation for Congressional visits began with John Hedstrom, the Director of Legislative Policy and Political Affairs, and Elizabeth Schoonover, Assistant Director of Congressional Policy for the AADA discussing the current political climate regarding health care, current funding, and future directions while noting the critical timing of making a significant and positive impact on the new administration and establishing a greater awareness for the government's support of medical research.

Robert Carter, MD, Deputy Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, (NIAMS) addressed current challenges researchers face and expressed concern for young researchers and the future of our nation's progress in medical research given the existing National Institutes of Health (NIH) budget. Mary Wooley, the President and CEO of Research!America, presented data from public opinion polls indicating that Americans as a whole support a commitment to medical research, but lack awareness about the NIH.

In the past 5 years, after adjusting for inflation, the (NIH) research funding has actually decreased. Consequently they've funded fewer projects, meaning more research proposals are rejected. This funding climate not only leaves many qualified research proposals unfunded, it also discourages young scientists from committing to such a risky and competitive field. By discouraging young scientists we generate a void in the future of our education and will fail to advance in our ability to treat diseases.

The good news is that President Obama has committed to double funding for the NIH over the next 10 years. In November 2008, Senator Max Baucus, the chairman of the United States Senate Committee on Finance, issued a health reform white paper urging immediate attention and action to improve health care funding. Both the House and Senate Appropriations Committees have proposed spending bills to increase the NIH budget by a total of $2.52 billion, and the Centers for Disease Control and Prevention (CDC)'s budget by $233 million for the FY 2009 Appropriations Bill.

Day two, SDRD participants assembled in groups according to home state making calls with their legislators on Capitol Hill.

As I've said in the past, any one of you can walk into your Legislator's office and say what you have to say. The people we elect to office are there to listen, and if your cause has worth to many and not just a few, steps will be taken to help make it happen. I urge each of our members who live in the United States to sign up for Advocacy Alerts. This way you will receive a first alert whether or not you log onto the website. Frequently voting issues crop up very quickly with very little notice or time to act, so the folks on the first alert can really make a difference.


Dr. William Hanke, President of the AAD, and Jackie Gardner, Executive Director of VSI, taken at SDRD 2009.


Can You Recognize This Skin Disease?

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The Coalition of Skin Diseases (CSD) recently produced a 4-color poster which was mailed to more than 4,000 U.S. dermatologists for their examining room walls. The poster has photos from the 16 different skin diseases that the CSD represents, including vitiligo. Bullet points describing vitiligo, a photo of a person with vitiligo, and VSI's Web site are also on the poster.

This poster is a great awareness tool for vitiligo for both the general public and the dermatology community. VSI is grateful to the Vaseline Skin Fund for financially supporting this project. Look for the poster in your dermatologist's office the next time you visit!


BROCHURES

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VSI has a new patient brochure providing current, accurate information on treatments, vitiligo genetics, and coping and other information which is currently located on our website. If you live in the United States and would like a copy of the brochure to provide educational information to your dermatologist, friends or family, you may order one by sending $1.00 (USA Dollar) and a self addressed, stamped, business sized (4 ½ in. x 9 ½ in.) envelope folded and placed inside an envelope and mailing it to:

Vitiligo Support International
P.O. Box 3565
Lynchburg Va. 24503

If you would like more than one copy, please include $1.00 (USA dollar) for each copy you order. Ex. 5 copies, $5.00; 10 copies, $10.00.

Unfortunately we are only able to mail brochures to the United States and Canada at this time. Please do not send an order request or money if you live outside of the United States or Canada.

We look forward to the day that we can provide these cost-free to anyone making a request, but at present this is not possible.

"Brochure Gift Fund"
If you would like to send a few additional dollars for this project, we will earmark it for this project and use it to fill brochure requests from those unable to provide the fee.

If we receive a request providing only a return address, we will place it in a "waiting file" until we have gift funds to cover the requests.

Please let your dermatologists know they can contact us directly at (434) 326-5380 if they would like VSI to mail them brochures to provide vitiligo patients in their office. (There is no charge to physicians for brochures.)


FOR OUR TEENS

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If you've been to VSI recently, you've surely noticed the adorable little girl in the ballet costume on the left side of the Home page. Many of you have met April Mitchell at conferences over the years, or chatted with her in the forums. April, while still delightful, is no longer a little girl. She's a beautiful young lady in her senior year of high school and she and her friend Elle Lipson recently produced a short documentary focusing on April's thoughts on growing up with vitiligo.

As a part of the Reel Voices documentary filmmaking internship with the San Diego Asian Film Foundation, student filmmaker Elle Lipson was encouraged to create a short documentary about identity. She chose to make her film about April Mitchell, a teen artist with the genetic skin condition of vitiligo. Rather than centering the film on the medical details and the difficulties of vitiligo, Elle chose to focus upon how April's vitiligo constructively forms her identity, her art, and her idea of beauty. This documentary portrays vitiligo not as a disease, but as a quality that makes one unique--April is different in terms of her physical appearance, and the documentary explores how her vitiligo helped make her unique in terms of personality and perspective as well. "The Beholder: Beauty Through the Eyes of April Mitchell" is an uplifting portrayal of the beauty of being different.

Elle Lipson is a student majoring in Film Production in the School of Cinematic Arts at the University of Southern California. Her primary interests in film are in the areas of directing and editing, and she hopes to work in the film entertainment industry.

You may view this video here: The Beholder: Beauty through the Eyes of April Mitchell


MEMBER SPOTLIGHT

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By Patty Stegall:

When I first logged on to Vitiligo Support I was in search of people I could talk with, people who had vitiligo. I longed to talk with others and ask how they were coping. The following is a very brief summary of my 56 years of living with vitiligo.

I had been in psychotherapy for several years for childhood trauma issues, drug addiction as an adult and the emotional pain that surfaced after stopping my use of amphetamines (diet pills). In counseling I began to grieve the neglect and abuse of my childhood, before and after I developed vitiligo at the age of 9 years. My last session of counseling was September of 2003. My therapist had asked me if I would like to write about my life with vitiligo and read it to her. So I did, and I know she listened to every word. At the end I told her how I longed to talk with other people who have vitiligo.

A few days later I was drawn to the Vitiligo Support website. I read so many messages that people had posted. I understood what they were sharing and what they were feeling. I could identify with them. Then I began to share how vitiligo had impacted my life. I found so much support and understanding from the members here at Vitiligo Support. This was an answer to my prayers. I finally had a place where I could talk about my vitiligo. I developed a bond with members. I became like a butterfly who had finally broken out of her cocoon. I finally was free to be me! I wanted to give what I received from friends I met at Vitiligo Support. This is my home away from home. It is my hope that everyone can find support, confidence, love of self and a new freedom by reading and sharing at Vitiligo Support. I have hope of a prevention or cure one day. In the meantime I will live with an attitude of gratitude one day at a time. This butterfly has a lot more sweet nectar to draw upon and enjoy. Talk to you later in the VSI forums. Thank you to all the people who keep Vitiligo Support International a safe and informative community.

If you would like to submit a short story (400 words or less) on the positive impact VSI has had on your life, you may send it to Info@vitiligsupport.org We will select one for each newsletter. The submission deadline for the Summer newsletter is June 10, 2009.


YOUR ROLE IN VSI'S FUTURE:

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HOW CAN YOU HELP

Do you have grant writing experience?

If so, would you be willing to volunteer your time and experience to help VSI obtain grant funding? We'd love to hear from you. Contact us at info@vitiligsupport.org


Do you speak Spanish? Are you able to type in Spanish?

We regularly receive phone calls and email requests from our Spanish speaking friends. We would like to be able to offer the same information and emotional support to these individuals, but we do not have anyone available to provide this service at this time. If you or someone you know is able to interpret and translate Spanish to English and vice versa, and would be willing to volunteer a few minutes now and then, please contact us at info@vitiligosupport.org and we will work to together to serve this section of our community. We will provide the information, we just need it translated.


DONATION OPPORTUNITIES

In Honor
Do you have a friend or family member with an upcoming birthday or anniversary and you're stumped for a gift? You may now make a tax deductible donation of $25.00 or more in "Honor of" this individual and they will receive a personalized certificate in the mail acknowledging your gift. For similar donations under $25.00 or outside of the Unites States, we will provide this certificate to them by email. You must provide an accurate email address for this service.

Memorial
Do you have a friend or family member who recently lost a loved one or beloved family pet? You may now make a tax deductible donation (of $25.00 or more) "In Memory of" this individual and designate who you wish to receive a personalized certificate in the mail acknowledging your gift. For similar donations under $25.00 or outside of the Unites States, we will provide this certificate to them by email. You must provide an accurate email address for this service.

For more information see our Memorial/In Honor of, Donation page


SHOPPING!

VSI participates in two programs that provide an easy way to support VSI by shopping online. Shop online as you always do, but VSI will get a percentage of each purchase, without costing extra. Easy, and FREE!!

Amazon.com has all kinds of items in addition to books. Purchasing products through Amazon, as long as it is done through the provided link here or on our website, returns a portion of the sale to VSI. The more items members buy, the higher the percentage!

Shopping for VSI through Amazon is easy

  1. Click here: Amazon.com
  2. Various posts on the site also have links to Amazon, including one 'stuck' at the top of the main message board that further explains the program.
  3. Shop through our Vitiligo Library and Store, described below.
  4. Go to the search box on the community home page (where you log in).

Our Vitiligo Library and Store, powered by Amazon, is filled with books and products you might find interesting. Many of the supplements and products recommended by Dr. Grimes and/or our members are available. Simply click here: Vitiligo Library and Store or enter through the menu on our website under Vitiligo Store and Products.

iGive.com

Our other program is sponsored by iGive.com. The iGive shopping mall has over 700 stores where you can shop and VSI gets a percentage. These include well-known names like Neiman Marcus, Best Buy, GNC and MANY more, including vitamin companies. Book all your travel through iGive, too. Virtually anything you can think of is available from an iGive merchant. You can even do your online searching through iGive (through Yahoo) and VSI will get 2 cents per search. Let friends and family know about iGive, so they can support VSI too.

You do have to register for iGive here: register for iGive. Once you've registered, you can either shop directly through their mall by going to iGive or, to make it even easier, you can download the iGive toolbar. With the toolbar, you'll get the search box (2 cents per search for VSI) and you'll also automatically be supporting VSI whenever you shop through an online site that's a member of iGive. You don't have to remember to enter through the iGive mall - it's all automatic. Purchase something within 45 days of joining, and VSI gets a $5 bonus! The way iGive is set up, you can also request a tax receipt at the end of the year.

You may think the amounts you can individually generate are too small to be worth it. VSI offers the power of numbers, though - if everyone shops through these programs, it adds up to a substantial support for our programs at VSI at no cost to you! Please remember VSI as you do your online shopping - it's so easy to do.


SUPPORTING MEMBERSHIPS

Are you a Supporting Member? If not, would you consider becoming one at this time?

So often we are told that before a member found VSI, they were unable to

  1. Locate a doctor with knowledge of vitiligo treatments
  2. Get their insurance company to cover their treatments
  3. Find much needed emotional support

Our Supporting Members are the heart and soul of our organization. If you are not a Supporting Member, you can thank them for providing all of these services for you.

For more information, go to "Supporting Membership"


In closing

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There is no other source available that offers the comprehensive vitiligo information we do, while at the same time operating a massive network of community forums. All of this requires funding and manpower.

Our staff and volunteers communicate daily with people in the vitiligo community who depend on us for information and connection. As we strive to meet the needs of an ever growing community in a very tight economy, we must turn to our membership for support. We are a federally recognized 501(c)(3) health nonprofit organization striving to sustain programs and outreach to serve the needs of our membership.

We ask you to reflect on the impact VSI has had on your life, and give back. We cannot do this without your support. We appreciate your donation and your commitment to making life better for those with vitiligo.