Sunday, December 30, 2012

Dupuytren Foundation Annual Report


Update from  Dupuytren Foundation President, Charles Eaton MD

It's been a year of growth and change for the Dupuytren Foundation.
  • The Dupuytren Foundation has reorganized its website Dupuytrens.org 
  • The Dupuytren Foundation has a new address:
    1732 S Congress Ave
    Suite # 348
    Palm Springs FL 33461

    Phone 949-CURE-DUP (949-287-3387)

    FAX 561-828-0494
    email: info@Dupuytrens.org
  • I have closed my clinical practice to work full time on organizing Dupuytren Foundation projects of public education, fund raising, and support of medical research. 

However, the problem of Dupuytren's has not changed:
  • 2012 didn't bring the end of the world, but unfortunately, didn't bring an end to Dupuytren's, either. We still need a cure. Work goes on, but only 76 papers - studies, reports and reviews - were published on Dupuytren's this year in peer-reviewed scientific journals: http://goo.gl/skZ0W.
 The good news:
  • There were 50 percent more papers published on Dupuytren's in 2012 compared to 2002. One third of the 2012 publications were research papers focused on genetics, cell biology, and the type of  basic science needed to develop a cure for Dupuytren's, compared to only one out of five in 2002. Progress!
  • 2012 saw the publication of a new multidisciplinary textbook on Dupuytren's, Dupuytren's Disease and Related Hyperproliferative Disorders: Principles, Research, and Clinical Perspectives which has had enthusiastic reviews: http://goo.gl/YKu0d.
  • Awareness of Dupuytren's is growing, thanks to efforts of the Dupuytren Foundation, the International Dupuytren Society, the British Dupuytren's Society, social media groups such as the Facebook Dupuytren Contracture group, and advertising by the pharmaceutical industry for Xiaflex® enzyme injection treatment for Dupuytren's.
  • The list of famous personalities known to be afflicted with Dupuytren's has grown: President Ronald Reagan; Prime minister Margaret Thatcher; pianist Misha Dicter; authors James Barrie (Peter Pan) and Samuel Beckett (Waiting for Godot); singer Frank Sinatra; actors Paul Newman, Bill Nighy and David McCallum; painter Andrew Wyeth, and hand surgeon Marc Iselin, who authored the first comprehensive book on hand surgery and was an influential Dupuytren's surgeon.These are just a few of the many millions who have or have had Dupuytren's worldwide.
The better news:
  • This year marked the inaugural award of  Dupuytren Foundation Research Grants. The two $10,000 2012 Dupuytren Foundation research grant recipients are:
    • In the category of Clinical Research: The Philadelphia Hand Center for the proposed study "Development of a reliable and valid patient rated questionnaire specific for Dupuytren’s disease"
    • In the category of Laboratory Research: UCLA Psychiatry & Biobehavioral Sciences for the proposed study "Discovery of gene causing familial Dupuytren's Disease". 
The best news:
  • These research grants were only possible because of  financial contributions from people like you. You can make a real difference in the quest for a cure by supporting the Dupuytren Foundation. You have several ways to show your support. It's not too late to be listed on the Foundation web site as an important donor in 2012! You can:
    • Make a secure cash donation here, right now: http://goo.gl/jPWtH
    • Make a charitable contribution through the mail
    • Donate using your company's matching contribution plan
    • Donate stock
    • Include the Foundation in your retirement plan, will or estate plan
  • You can be assured that your contributions will go where they will do the most good, because the Dupuytren Foundation's organization as a volunteer run public charity provides no salaries: zero administrative overhead.
  • A patient advisory board will be formalized in 2013 as a strategy to grow the Foundation. We are actively recruiting members of the Dupuytren community to apply for positions on the Dupuytren Foundation patient advisory board. It's time to pull together and work for 2013 events and research grants. Please contact info@Dupuytrens.org if you have experience with
    • Foundation work
    • Fund raising
    • Grant writing
    • Event planning
    • Promotions and advertising
 Thanks for making this a great year - this is still just the beginning!

Have a great 2013 and support efforts to find a cure -

Charles Eaton MD

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