Vitiligo Support International Inc., (VSI) would like to thank all of our members for their contributions and support during this past year. In spite of the economy and world affairs, our vitiligo community continues to flourish and work together in what many describe as a family- like atmosphere.
Generously Sponsored by Daavlin Home Phototherapy
Click Above for Information on Home Phototherapy Light Options
If you have not logged on recently, please do so. You’ll see changes and improvements are underway as we work toward our goal of improving the lives of all those affected by vitiligo.
We have updated and consolidated our information to provide accurate and current facts on all the topics most frequently asked about. From our Home page you can now find abundant information, concerning different types of vitiligo; genetics and incidence; and diagnosis; what to expect at your dermatology visit; all aspects of treatment such as phototherapy, topical therapies, surgical options, depigmentation, natural therapies and diet, and much more.
Once you log on to the Community, you will find a great deal more information from the menu on the left including a new category titled “Website Tips” which includes many helpful tips on how to most effectively use the website.
There are far too many new features to list here, so do yourself a favor during the holiday season and take a few minutes to log on at www.vitiligosupport.org and check it out for yourself.
Camp Discovery 2009
The American Academy of Dermatology (Academy) is proud to offer four camping sessions this year for young people with chronic skin conditions who are between the ages of 8 and 16. 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, while participating in everything from swimming and fishing to horseback riding to lots of camp games and activities. All campers must be referred by their dermatologist.
There is no fee to attend this very special camp. Full scholarships, including transportation, are provided by the Academy through generous donations from its members, outside organizations and individuals.
2009 Dates:
- July 5 – 10, Teen Camp in Crosslake, Minnesota (ages 15 – 16)
- July 11 – 17, Junior Camp in Crosslake, Minnesota (ages 10 – 14)
- August 9 – 14, Camp Dermadillo, Burton, Texas (ages 9 – 16)
- August 15 – 22, Camp Horizon, Millville, Pennsylvania (ages 8 – 13)
For more information about attending or volunteering please visit their Web site at www.campdiscovery.org or contact Janine Mueller at 847/240-1737 or jmueller@aad.org.
Dr Spritz’s Vitiligo Genetic Study:
Dr Spritz reports:
We have now received a major grant from the U.S. National Institutes of Health to carry out the largest vitiligo research study ever undertaken, the international VitGene consortium genome-wide association study, aiming to identify susceptibility genes for generalized vitiligo, the most common pigmentation disorder. This study offers the best hope to discover the true biology underlying vitiligo, and thus to open up paths to investigate new treatments and cures.
The project will have four phases, which altogether will take about 4 years. Phase 1, taking place now, is the initial genome-wide screening phase, testing 610,000 genetic markers in 1500 Caucasian patients and 1500 unaffected individuals ("controls") from the USA, Canada, and United Kingdom (UK). About 80% of the samples come from our laboratory and about 10% each from Prof. Gawkrodger’s group at Sheffield University (UK) and Profs. McCormack and Wallace’s group at the University of Florida. Phase 1 will cost almost three million dollars, plus another four hundred thousand dollars to purchase the necessary specialized laboratory instrumentation, so if you know any philanthropists, please tell them about us.
Phase 2, to take place 1-2 years from now (sample collection going on now), will follow up promising results from Phase 1 in another ~2750 different Caucasian patients and ~2750 controls from the USA, UK, and continental Europe, as well as in ~400 additional Caucasian vitiligo families (patients and their relatives).
Phase 3 (sample collection going on now) will test genes proved out in Phases 1 and 2 in other, non-Caucasian groups, including USA and Colombia Hispanic/Latino, African-Americans and Nigerian blacks, middle-eastern Arabs, Indians and Pakistanis, and various Asian groups. Currently, VitGene includes 38 investigators in 21 countries (USA, Canada, Colombia, UK, Belgium, Holland, Sweden, France, Germany, Italy, Spain, Czech Republic, Hungary, Jordan, Saudi Arabia, Bahrain, Nigeria, Pakistan, Japan, S. Korea, and Taiwan), with additional sites being considered.
Thanks to the many of you who have already sent in study entry questionnaires and saliva samples, and thanks to NIAMS for funding our work. We very much appreciate your support! However, we still need additional samples from BOTH patients and unrelated, unaffected 'controls' of Caucasian, Hispanic/Latino, African/African-American, Indian subcontinent, and Asian ethnic origins. Please participate if you haven’t done so already. 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
Thanks again, and very best wishes to you all.
Richard A. Spritz, MD
Professor and Director
Human Medical Genetics Program
University of Colorado Denver
Aurora, CO 80045 USA
Vitiligo, The Patient's Point of View
Wherever you live, at Loyola University Chicago we want to hear about your case of vitiligo. This helps us direct our research, and to find support for our current thoughts on progressive depigmentation. The questionnaire should take between 5 and 10 minutes to complete. Please complete the form in the link below and send to the email address below to have the results included in our database. We intend to publish the data once ample questionnaires have been returned to us. Thank you for your contribution.
Patient’s Point of View
I. Caroline Le Poole Ph.D.
Associate Professor of Pathology
Loyola University Medical Center
email: ilepool@lumc.edu
VSI is always seeking opportunities to advocate on behalf of our vitiligo community. VSI had the opportunity to participate in the American Academy of Dermatology Association’s (AAD) 2008 Legislative Conference held September 7 - 9 in Washington, D.C.
A day and a half of the conference was spent learning about this year’s message to Capitol Hill. I was one of more than 100 dermatologists, practice administrators, patient advocates, and state dermatology society executives from 40 states who participated. This is the first year the AAD has included patient advocates to this conference. I hope they will include the patient voice in the future.
We were asked to educate our lawmakers on why skin disease should be regarded as a serious medical condition. Giving examples of how skin disease impacts every facet of a patient’s social, physical, and financial condition, we urged a strong federal investment in medical research through the National Institutes of Health (NIH) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
We live in incredibly stressful times right now. There are so many outstretched hands and pleading voices pulling our nation’s legislators in every direction that I honestly don’t know why any of them would ever want these jobs; it must be heartbreaking to put everything you have into a job that may or may not be yours four years later. Fortunately for us, they do, and as a patient who has spent many years visiting senatorial and congressional offices, I am once more struck by how there may be things wrong with this country, but there is one thing we always get right.
Any one of you can walk into your Senator or Congressperson’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. We must never forget that. In the ten years I have been making calls as a patient advocate, I have seen doubling of the NIH budget for NIAMS. I have also seen funding cut back to a level that seriously limits the hope that some of our best and brightest young medical students will pursue a career in skin disease research. We can and must change that possibility, and we do it with every letter or email or personal visit to the people who have the power to change our future.
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 with their contact.
VSI continues to work on behalf of our members and all those whose lives have been impacted by vitiligo. We attend meetings and work sessions with organizations we partner with such as The Coalition of Skin Diseases (CSD), The American Academy of Dermatology (AAD), The Society for Investigative Dermatology (SID), The National Institute of Arthritis and Musculoskeletal and Skin Diseases Coalition (NIAMS) , The American Autoimmune Related Diseases Association (AARDA) and The National Coalition of Autoimmune Disease Patient Groups (NCAPG). Our efforts with these organizations are primary to our mission of raising awareness, promoting research and supporting those affected by vitiligo.
Though our online forums may be our most outward and visible program, you can see from this newsletter that we are much, much more. 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.
Recently one of our members offered this:
"I would like to express my gratitude to the community on this website especially the moderators for providing such a rich mine of information on vitiligo. My first Dr. didn't tell me much about this condition. I got most of my research done here and I have learnt to cope with this condition from here. Hopefully the researchers can find a cure soon."
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 cannot do this without your support.
As you consider gifts to those closest to your heart this season, we ask that you remember VSI with a Donation, "Memorial", or "Gift in Honor" by clicking the "Donate" link. If you are not yet a Supporting Member, please consider becoming one today by logging on and selecting "Supporting Member" from the menu on the left side of the community page. As we depend on private donations to continue our work on your behalf, your gift at this time will help to directly impact the life of a person with vitiligo.
The VSI Board and Staff wishes you, your family and loved ones the very best during this holiday season.
|
