Myotonic Dystrophy Foundation

Shannon Lord, Former Founding Chairman (May 2006 - March 2009)

Shannon Lord is an Atlanta, Georgia resident where she lives with her architect husband, Larry, and two adult sons, Hunter and Ashby. She has the mild form of DM1, and her two grown sons have childhood-onset. An artist, writer, gardener and volunteer, she has also been a myotonic dystrophy advocate for nearly ten years by raising $300,000 in research funding, speaking at International Myotonic Dystrophy Conferences, the NIH and other places. She convened the American family members who attended the International Myotonic Dystrophy Consortium (IDMC-5) in Quebec in 2005. Out of that meeting the Myotonic Dystrophy Foundation evolved with Shannon as a founding member.  Contact: smlord@mindspring.com

 

  Barry Wald, Former Vice-Chairman (May 2006 - May 2009)

Barry Wald, hails from Portland, Oregon. Along with a group of close friends he has organized and participated in three Run America relays - elite, long-distance running/cycling events - to raise awareness and $250,000 in research funding for myotonic dystrophy. Since his graduation from Harvard and Carnegie Mellon graduate school, his business career has spanned 25 years in the computer industry - the last 18 years spent at Intel - until he retired under the company's disability program in 2007.  He has the classical form of adult-onset myotonic dystrophy. Barry participated in the NIH-funded clinical trial for Somatakine at the University of Rochester during 2006. He and his wife, Ruthie, pioneered the use of prenatal screening for myotonic dystrophy and succeeded in having two non-affected daughters. In attendance at the IDMC-5 in Quebec, he is a founding member of the MDF.  He has particular expertise in myotonic dystrophy research funding, genetic testing, and disability insurance programs.  Contact: barry.wald@hotmail.com

Alice Gunderson, Board Member

Alice Gunderson, along with her late husband, Ed, in the late ‘90’s founded the Myotonic Dystrophy Awareness and Assistance Support Group in the Los Angeles area. Together they have done incredible work to help families with myotonic dystrophy cope with their progressive, multi-systemic disease by organizing monthly, pot-luck, support group meetings with relevant speakers; organizing an annual conference and fundraising evening, an annual golf tournament; a physician education evening offering Continuing Education Units (CEU’s), publishing a newsletter several times a year, hosting a chat room on the MDA web site, and more. Ed was an optician until classical adult onset myotonic dystrophy progressed to a point where he could no longer work and eventually took his life. Alice works as a personnel agent for middle managers in the fashion industry. Contact: alice.gunderson@myotonic.org