connecting the spots

Hello and to whom this letter reaches I want to first say, “Thank you”. I say this whole-heartedly because I know what support does for us living with Vitiligo.To say the least it is very much needed.

 My name is Larry aka, Spotty King. I guess you could say that its the name I gave myself when I finally accepted my vitiligo spots. I am contacting you because I believe that I can help assist you and the vitiligo community that you serve everyday. After feeling the pain of vitiligo for ten years, I noticed a need in the lives of those living with the disorder. I noticed there was a need to help people with vitiligo meet others and share their stories, also to communicate and help one another on a daily basis. I have also noticed that there was a need to help those living with vitiligo to find love even though their appearance is different than most people in the world.

Many people with vitiligo would feel uncomfortable posting their photos on social and dating sites because they would be competing against the people we socially deem pretty and handsome in the world. So, after some helpm I created vitiligomatch.com to help the vitiligo community. This social site is a place where people with vitiligo and those who support us can,”feel at home”. They can share pictures, video chat, and even date. Right now there are so many with vitiligo that lack companionship, and I thought, “what better way than to communicate with someone else who understands vitiligo”.

I am not asking for a donation or hand out, I am asking you take a look at our site and if you like it thenshare it with those whom you are serving in the vitiligo community. Membership is 100% free and dating features are only $5 bucks a month with no commitments, I’m not trying to get rich, just a small fee to compensate me for the money I spend to keep the site up and running. I hope that you would share this wonderful opportunity with them so they can be part of something special, something built just for them. If you do not decide to share our social site, or are not fond of it, please give us your feedback so that we can make appropriate changes to better serve the community.

Thank you again for doing what you do in our community and for taking the time to read this invitation. Keep doing what you are doing, and we will keep caring.and connecting the lives we care so much about.

Sincerely
Larry aka Spotty KING (creator of http://www.vitiligomatch.com)

World vitiligo Day 2015

Stats from the World Vitiligo Day campaign

The World Vitiligo Day campaign is gearing up. This year’s headquarters are in China, under the presidency of Prof. Xing Hua Gao, Chairman of Department of Dermatology, No.1 Hospital of China Medical University. Next year, the campaign headquarters will be in Prague, the beautiful capital of the Czech Republic, and a leading candidate to host the World Dermatology Congress in 2019.

We are nearing our target number of petitions for the UN. As of April 28, 2015 we have collected 486,991 online signatures. That’s enough to fill up seven National Football League stadiums! (Wikipedia)

Here are stats representing breakdown of signatures by country to this date. If you haven’t done this yet, please go to http://www.25June.org and sign the petition.

Enlarge the image

– See more at: http://vrfoundation.org/announcements/148#sthash.KET7tnz0.dpuf

VRF Newsletter

This month, I have a few warnings for you, as well as good news about a new treatment, and some interesting announcements.

With summer approaching, you will no doubt be slapping on the sunscreen. However, please be careful as studies have shown that some sunscreen chemicals, including octyl methoxycinnamate (also called OMC), 4-methylbenzylidene camphor and benzophenone 3, could potentially disrupt your developmental, reproductive and endocrine systems. Be sure to check labels before you buy and choose sunscreens with physical blockers, such as zinc oxide or titanium dioxide.

I also have a warning about diet for you. Research in Europe has shown that sudden dietary changes, such as switching to a vegetarian diet or excessive drinking, may trigger or worsen vitiligo in genetically pre-disposed people. A gluten-free diet, however, has no direct effect on vitiligo.

Let me also expand on a warning from last month’s newsletter about dietary supplements, including Gingko Biloba, that have been found not to contain the DNA of the plants listed on the labels. Now, a new study reveals that many weight loss and fitness supplements contain a potentially dangerous ingredient, similar to amphetamine. To stay safe, avoid buying anything that contains the chemical BMPEA, often labeled as Acacia rigidula. 

Enough warnings, now for some positive news! The patent on a Polypodium Leucotomos, plant extract derived from types of South American fern, has just expired. This opens up the market for new products for vitiligo based on healing powers of the nature, coming soon. Indigenous people of rainforest have long used the plants to treat and alleviate symptoms of vitiligo and other autoimmune disorders. You can read more in our FAQ section.

To finish this month, I have two short announcements:

Firstly, the campaign headquarters for World Vitiligo Day 2016 will be in Prague, the beautiful capital of the Czech Republic, and a leading candidate to host the World Dermatology Congress in 2019. This year’s headquarters are in China, under the presidency of Prof. Xing Hua Gao, Chairman of Department of Dermatology, No.1 Hospital of China Medical University.

Secondly, at the Vitiligo Research Foundation we are stepping up our collaboration with Vitiligo Support International. Greater interaction between the VRF and VSI is good news for patients, doctors and researchers everywhere.

Lastly, if you have a free evening today and live nearby, check out these two events: Vitiligo Karaoke Night in New York and Born To Rise – Launch Event in Canada.

With my best wishes. 

Sincerely, 

Yan

Born To Rise – Launch Event in Canada

We invite you to a night filled with inspirational stories and entertainment. Aiesha Robinson, founder of the non-profit organization Born To Rise, hopes to spread her message of her personal struggles and acceptance of vitiligo, and also to promote an important dialogue about empowerment of youth that seems to be lacking within society today. Come find out what Born To Rise represents, all while meeting some interesting individuals. “Being the guiding light for individuals isolated in the darkness of life’s obstacles and issues.”

Doors open at 6.00 PM where you can purchase food, while checking out informative booths. Show will commence at 7.00 PM.

When: Saturday, 25 April 2015 at 7:00 PM (EDT)

Where: Westmount High School
4350 Rue Sainte-Catherine Ouest
Westmount, QC H3Z 1R1
Canada

more information at:
http://vrfoundation.org/announcements/143

vitiligo support meeting at the AAD annual meeting in San Francisco.

Yan Valle, VR Foundation CEO and Jackie Gardner, Executive Director of Vitiligo Support International, have discussed the current state of vitiligo affairs and collaboration at the AAD Annual Meeting in San Francisco. 

Vitiligo patients, physicians, researchers all need better outcomes. Getting to better outcomes doesn’t necessarily mean better drugs, but rather it means better patient-centered measures to enhance research and treatment. “Outcomes measures don’t take into account all aspects of vitiligo, they need distinguishing which treatments and doctors add extra value,” says Jackie Gardner. “While there has been dramatic progress in vitiligo research, gaps remain. Key questions include the ability to predict who will develop vitiligo, and the ability to predict which patients will respond to which therapies,” says Yan Valle. Vitiligo non-treatment, under-treatment, and treatment dissatisfaction remain a significant problem in the United States and worldwide. Setting a clear target, like % of re-pigmentation as a result of the treatment, seems like a simple task, but the reality is far more complex. Multiple stakeholders in vitiligo — patients, doctors, researchers, and insurance companies — all have their own goals, priorities, and questions of interest. VR Foundation and VSI will continue bridging stockholder’s interests and mutual collaboration in order to achieve  better outcomes in vitiligo.

Vitiligo CloudBank

Vitiligo CloudBank

The Vitiligo CloudBank is a free self-help patient portal that lets you monitor your condition and treatment progression. It is anonymous, easy to use and offers you the opportunity to collate, focus and streamline your vitiligo health data, treatments and photos.

Sharing your details via the CloudBank will also make a real difference, as your contribution helps doctors and researchers who are collating information from vitiligo sufferers across the world. Understanding and analyzing this data is a vital factor in the search for a cure for vitiligo.

The CloudBank also gives you the chance to seek expert opinion on your condition, by sharing your details with doctors registered on the CloudBank. You simply need to grant temporary access to your health record, email or send a print-out of your profile to one of the many doctors listed on the site, then you will receive expert opinion on your condition and how best to treat it.

Please help us to help you and the millions of other vitiligo sufferers across the world and join the CloudBank today.
To get started with your CloudBank journey, simply click here. All you need to provide is your email address to log in, then any information you supply is completely anonymous.

If you have any questions about the vitiligo CloudBank and how to use it, please contact us.

– See more at: http://vrfoundation.org/patients–2/vitiligo-cloudbank-for-patients#sthash.OdE3r9QR.dpufhttp://vrfoundation.org/patients–2/vitiligo-cloudbank-for-patients#sthash.OdE3r9QR.dpuf

World Vitiligo Day: we stand united on June 25th!

World Vitiligo Day: we stand united on June 25th! The General Body Meeting of Indian Association of Dermatologists, Venereologists and Leprologists (IADVL), the largest representing society of Indian Dermatologists, has approved today the changing of IADVL VITILIGO Day from May 19th to 25th June. On behalf of WVD Steering Committee, we thank IADVL President Dr. Deepak Parikh, and Dr. Davinder Parsad, President of the World Vitiligo Day 2014 that was held in Chandigarh, for their invaluable support and contribution to the campaign. – See more at: http://vrfoundation.org/announcements/135#sthash.tIcLmRaT.dpuf

Warning for Gingko Biloba users

Four major retailers in the US accused of selling fraudulent and potentially dangerous herbal supplements, including Gingko Biloba often prescribed to vitiligo patients. Investigation by New York State attorney general found that as many as a 45% of herbal supplements tested did not contain the plants listed on their labels — only cheap fillers instead. In the study, nine of the tests revealed no Gingko Biloba plant DNA but only allium, rice, spruce, and asparagaceae. Read the full story in the New York Times.

Warning Gingko Biloba Vitiligo

– See more at: http://vrfoundation.org/announcements/134#sthash.z3weodOm.dpuf

ABC’s Of Vitiligo

At the Vitiligo Research Foundation we may help you understand your skin condition, feel more in control, and even get more out of your next doctor’s appointment. So, to make things easier, here’s are some useful information and Q&A from our Scientific Board:

About Vitiligo » » »

Vitiligo Symptoms » » »

Vitiligo Treatments » » »

Questions & Answers » » »

The exact reasons why you may have vitiligo aren’t fully understood at present, but recent scientific advancements give hope for a better day.

Photo: page from Miriam Hamad’s book (Detroit, MI)