Welcome to the new edition of VRF Newsletter, a monthly dose of news on the latest in vitiligo research, treatments and lifestyle — and everything around and in-between.
For our inaugural newsletter, we're talking about: a) fake science and its effect on ... uhm... you, b) a legendary TV host Lee Thomas and his way out of the daily stress, and c) how to take part in research and make $50.
I’m not sure when it started in the mainstream media. Today, even the most respected news outlets are writing their headlines for clicks and articles for shares. Sometimes clever, often misleading, they catch our attention for a moment… but hey, who cares, right?
Yet, these clickbait headlines, with ALL CAPS ON, have been a rare sight in scientific publications — until recently.
Journals picked up the trend with titles like THE MICHAEL JACKSON AND WINNIE HARLOW EFFECT: IMPACT ON VITILIGO AWARENESS ON THE INTERNET. (I won't get into discussion of this pseudo-research of Google Trends here, but you can look it up on Pubmed.)
Scientific fraud is nothing new, and faux research hoodwinks not only dermatology journals. However, the scale of this fraud and its downstream effect on public health have been grossly underestimated.
Online sellers of "anti-vitiligo oil", "vitiligo supplements" or "herbal mixtures" often cite deeply flawed, low quality, pseudo-research papers on vitiligo that fit their narrative. Whether intentionally or not, they put health of vitiligo patients at massive risk, often with severe consequences.
Next time you read about a 'miraculous product', check out their sources. Here are five simple ways to spot fake research, courtesy of the Institute for Public Relations.
Feel like getting motivated or just looking for a feel-good news story? There's no better way to take a break from your day than with a fresh cup of coffee and a great TED talk from the most respectable name in vitiligo community.
Watch this incredibly moving TED talk from the vitiligo spokesperson, 4x Emmy award winner, Fox2 TV entertainment guru, and our best friend, Lee Thomas. His extremely personal talk explores the uncomfortable feeling of vulnerability familiar to every person with vitiligo, and suggests the way out of a daily stress.
Lee shares how he discovered a way to counter misunderstanding and fear around his appearance with engagement, dialogue -- and a smile. "Positivity is something worth fighting for, and the fight is not with others -- it's internal," says Lee. "If you want to make positive changes in your life, you have to consistently be positive."ANNOUNCEMENT
Vitiligo Research Foundation has teamed up with Sanguine, a provider of at-home clinical research services, to give you the opportunity to contribute to the development of new Vitiligo treatments from home and earn $50.
Participation requires a simple blood donation, and a mobile medical professional will work around your schedule to meet you in the comfort of your home and perform the blood draw.
Donating is easy and fast, and you will receive $50 compensation as a Thank You for your time.
You may qualify to participate if you:
- Are 18 years of age or over
- Have been diagnosed with non-segmental vitiligo for at least 3 months
- Live in the U.S.
To learn more or sign up, visit website or call +1-818-804-2468 to speak with a research coordinator and see if you qualify.
That's it for now. This is my another experiment in newsletter design and its contents. Whether you love it or you hate it, simply drop me a line.
Yan Valle, CEO VR Foundation
- What is vitiligo?
Vitiligo (pronounced vit-ill-EYE-go) is a relatively common skin disease characterized by smooth, white, painless spots or patches on various parts of the body and hairs above i...
- How to get insurance coverage for vitiligo treatments?
Most of health insurance companies will initially reject claims for vitiligo doctor visits or phototherapy treatments but with enough efforts you can have a substantial part of ...
- I have a new job - should I tell colleagues about my vitiligo?
If you are starting a new job and you are concerned about stares and questions about your skin, try a proactive approach. When the time is right and you are feeling comfortable,...
Our work is entirely funded by private donations – we receive no money from government. Your money will help us continue funding research into vitiligo and supporting people affected by the condition.
Though it is not always easy to treat vitiligo, there is much to be gained by clearly understanding the diagnosis, the future implications, treatment options and their outcomes.
Many people deal with vitiligo while remaining in the public eye, maintaining a positive outlook, and having a successful career.Copyright (C) Bodolóczki Júlia
By taking a little time to fill in the anonymous questionnaire, you can help researchers better understand and fight vitiligo.