11 May

2016 Walk Receives Local Coverage in Utah

The Deseret News in Utah published a story on ASF Walk Coordinator, Michelle Gilbert, and her son Aiden.

Aiden Gilbert is a happy 11-year-old from South Jordan. He likes to spend time with his family, and he is very social.

“He is a really fun kid,” said his mother, Michelle Gilbert. “It’s just a real joy to interact with him.”

When he was almost 2 years old, Aiden was diagnosed with Angelman syndrome . . .

See the full Deseret News article here.

10,000 People Walk In 35 Cities Nationwide To Find A Cure For Angelman Syndrome
19 May

10,000 People Walk In 35 Cities Nationwide To Find A Cure For Angelman Syndrome

Congressman Todd Rokita (R-IN) enjoys the ASF National Walk in Indianapolis with his wife and two sons, one of whom, Teddy, is diagnosed with Angelman Syndrome.

Congressman Todd Rokita (R-IN) enjoys the ASF National Walk in Indianapolis with his wife and two sons, one of whom, Teddy, is diagnosed with Angelman Syndrome.

Over the weekend, more than 10,000 people marched to raise awareness and funds to support improving the lives of those affected by Angelman syndrome, a severe, neurogenetic disorder often misdiagnosed as autism or cerebral palsy. Families, friends and individuals with Angelman syndrome participated in the Angelman Syndrome Foundation (ASF) National Walk in 35 cities across the country to raise funds to support the ASF, a national nonprofit organization dedicated to advancing the awareness and treatment of Angelman syndrome.

More than $1 million has been raised (in preliminary totals) towards the $1.25 million fundraising goal, with fundraising continuing until the goal is achieved. Individuals are encouraged to donate or help fundraise in support of the Angelman syndrome community.

“We are in awe of the love, support and dedication that everyone who participated in or supported the ASF National Walk expressed for our individuals with Angelman syndrome,” said Eileen Braun, ASF Executive Director, walk founding organizer, and mother of Kaitlin, who has Angelman syndrome. “It is an exciting time in the Angelman syndrome community as research continues to advance and develop treatments as we move closer towards an eventual cure, and more and more services are becoming available to help individuals with Angelman syndrome and their families. Without the support for the ASF National Walk, a number of these advancements would not be possible, and we are incredibly grateful for everyone who is helping us achieve our fundraising goal in support of our loved ones with 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.

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 80,000 individuals have participated, raising more than $9 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.

“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,” added Braun. “The ASF National Walk is the perfect opportunity to help us reach our goals as a community.”

This year, the ASF National Walk expanded internationally with a new Walk site in Ontario, Canada, which is being held this coming Saturday, May 23. Several other new cities also joined the cause this year as 2015 ASF National Walk sites—Olathe, Kan., International Falls, Minn., Lake of the Ozarks, Mo., Durham, N.C., and Warwick, N.Y, which all held their Walks this past Saturday. The following cities hosted a Walk this year:

Alabama (Huntsville)
Arizona (Tempe)
California (Los Angeles)
California (Sacramento)
California (San Diego)
Colorado (Denver)
Connecticut, (Hartford)
Florida (Orlando)
Illinois (Naperville)
Indiana (Indianapolis)
Kansas (Olathe)
Kansas (Wichita)
Louisiana (Breaux Bridge)
Massachusetts (Boston)
Michigan (Auburn Hills)
Minnesota (Hutchinson)
Minnesota (International Falls)
Missouri (Lake of the Ozarks)
Missouri (St. Louis)
Nevada (Las Vegas)
New York (Buffalo)
New York (Warwick)
North Carolina (Durham)
Ohio (Cincinnati)
Ontario (Canada)**
Oregon (Eugene)
Pennsylvania (Philadelphia)
Pennsylvania (Pittsburgh)
South Carolina (Columbia)
Tennessee (Nashville)
Texas (Dallas)
Texas (Houston)*
Utah (Salt Lake City)
Washington D.C.
Washington (Seattle)

*The Houston, Tx. Walk was held Sunday, May 17.
**The Ontario, Canada Walk will be held Saturday, May 23.