Hundreds will gather at Nelson Street Recreation Area on Saturday to raise awareness and funds for Angelman syndrome, a severe genetic disorder often misdiagnosed as autism or cerebral palsy. The Walk raises funds for the Angelman Syndrome Foundation, a national non-profit organization dedicated to advancing the awareness and treatment of Angelman syndrome.
Last year, more than 300 attended and raised $50,000 at the Boston (Plymouth) Walk, contributing to the total $1 million raised at the 30 total Walk sites across the country.
The Walk starts at 10:00am and registration opens at 8:30am.
“In the last 15 years, the ASF National Walk has helped to raise much-needed funds and awareness for the Angelman
syndrome community,” said Eileen Braun, ASF Executive Director, walk founding
organizer, and mother of Kaitlin, who has Angelman syndrome. “However,
there is still much work to be done when it comes to meeting the future funding
needs on behalf of the Angelman syndrome community and achieving the ultimate
goal of finding a cure for Angelman syndrome.”
Angelman syndrome is caused by the loss
of function of a particular gene during fetal development, resulting in severe
neurological impairment present at birth and lasting for a lifetime. Symptoms
vary and include severe developmental delays, speech impairments, seizures,
walking and balance disorders, and frequent laughter and excitability. While
there is no definitive count, it is estimated that Angelman syndrome occurs in
one in every 15,000 live births.
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The ASF National Walk supports the community’s
ultimate goal of finding a cure for Angelman syndrome. Since the event began in
1999, more than 60,000 individuals have participated, raising more than $8
million for the ASF. These valuable dollars fund research initiatives, support services for families and caregivers
of individuals with Angelman syndrome, and informational and educational
programs for those battling the disorder including families, educators, health
care professionals and researchers.
For more information or to register, visit Angelman.org/Walk.
