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Congratulations to the 2012 National Fragile X Foundation Awards Recipients!
(Until 2012 called the Education & Awareness Award)
Diane Southard is a determined and well-organized leader who is highly regarded by members of her Fragile X Resource Center of Missouri and the larger Fragile X community. She has contributed in multiple arenas since 2005, including involvement in many successful fundraising and educational events, state and federal advocacy efforts, mentoring for other parents of children with disabilities, and speaking engagements in which she passionately addresses issues important to Fragile X and the entire disability community. Her dedication and passion have resulted in a significant increase in Fragile X awareness and understanding by a variety of constituencies.
The married team of Mary Beth Langan and Ted Coutilish each have unique talents which they effectively combine not only to help their son but countless other families impacted by Fragile X. They have made a real and sustained difference in the Fragile X community by serving as officers and directors in the Fragile X Association of Michigan (Mary Beth), the National Fragile X Foundation (Ted), and as authors of a well-received local news column about life with Fragile X and autism. They fundraise, they support, they educate, they nurture, they are great parents, strong advocates, and they never miss an opportunity to be generous with their assistance for those needing help.
Dr. Kim Huber is a renowned scientist who has played a key role in advancing our understanding of fragile X syndrome. Her research has been critical to recent breakthroughs leading to the development of potential new treatments (currently undergoing clinical trials) that address the core deficits in FXS. Kim has a deep awareness of and sensitivity to how her research ultimately impacts families. As a result, she played a role in the establishment of the Fragile X Clinic in Dallas, Texas.
Deborah Kwan has served the Fragile X community in multiple capacities since the 1990s. Her roles have included occupational therapist, NFXF volunteer, staff member, international conference organizer, and, until recently, membership on the NFXF Board of Directors. Deborah played a crucial role in the foundation’s expansion from a tiny, almost anonymous nonprofit to a prominent organization with an international reputation. She has served with passion, dedication and a commitment to all persons with special needs.
For the past 10 years, Dr. David Hessl has focused his research on cognition and behavior in children and adults with fragile X syndrome. Recently, his work has expanded to focus on Fragile X premutation carriers, who as children are at increased risk for attention deficit hyperactivity disorder and autism, and who as older adults are at risk for FXTAS. David is part of the Fragile X Clinic team at the UC Davis M.I.N.D. Institute in Sacramento, California, where his knowledge, caring and insight have earned him a stellar reputation among Fragile X families and other clinic visitors. David also serves as a member of the NFXF’s Scientific & Clinical Advisory Committee.
Dr. Rob Willemsen has been studying Fragile X since the 1990s and is credited with some of the earliest mouse work that shed light on Fragile X-associated Disorders. In the past few years, his group at Erasmus Medical Center in the Netherlands has begun to focus on the molecular mechanisms underlying FXTAS. Rob serves on the NFXF’s Scientific & Clinical Advisory Committee and is a past recipient of NFXF research funding. His commitment to expanding our scientific understanding of Fragile X continues to have a worldwide impact.
Dr. Walter Kaufmann has been practicing medicine for 25 years, devoting his life to advancing our understanding of neurodevelopmental disorders including fragile X syndrome, autism and Rett syndrome. He currently serves as a director at the Center for Genetic Disorders of Cognition & Behavior at Boston Children’s Hospital after serving many years as medical director at the Fragile X Clinic at Kennedy Krieger Center in Baltimore. Walter has also been instrumental in the development of the Fragile X Clinical & Research Consortium and its nationwide network of clinics, and is a member of the NFXF’s Scientific & Clinical Advisory Committee. He stands as the perfect example of a scientist/humanitarian whose good works continue to impact the field of Fragile X.
As the proud father of four adult daughters with fragile X syndrome, few people better understand the FXS journey better than Marty Lang. Marty also deeply appreciates the importance of giving back to those who helped he and his family on that journey. His volunteer work over many years with the NFXF and with the LINKS group in his home state of Wisconsin exemplifies that understanding. Marty’s six years as an NFXF board member, plus many additional years as an ad-hoc member of various NFXF committees, is just a small part of what he has given back to the Fragile X community. Most important, he has achieved national recognition as a role model for families impacted by FXS who are striving to raise healthy, happy children while also making an impact in the larger community. Marty is richly deserving of the recognition and thanks that are reflected in this lifetime achievement award.