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Angelman Syndrome Foundation hosted 30 walks in 30 cities across country to raise awareness, funds to find a cure for Angelman syndrome. More than 10,000 supporters attended and raised approximately $1,030,000 to date!
To view a preliminary comparison of the 2011 & 2012 National Walk, click here.
The Angelman Syndrome Foundation Walk, formerly the One Step Closer ASF National Walk, has been an essential source of funding for the Angelman Syndrome Foundation since its start in 1999. What began as a single volunteer walk site, now includes 29 walks across the country and is recognized as the top fundraising event for the organization. Through education, information, research, advocacy and support, your participation in the National Walk helps all of us at ASF take strides toward improving the lives of those impacted by AS. With your help, we are moving closer to powerful treatments and an eventual cure for Angelman syndrome. We are continually grateful for the support that we receive year after year.
Since 1996, the ASF has funded over 66 research grants totaling over $4.6 million. The most aggressive funding of research is aimed at finding therapies and treatments for curing certain AS symptoms.
In early 2011, the Dr. Joseph E. Wagstaff Postdoctoral Research Fellowship was announced; the inaugural year of which was generously funded by the Schiller Family Foundation for $110,000. Not only is investment in AS research expected to help those living with and affected by AS, but other conditions that share related symptoms such as autism, epilepsy, Rett Syndrome, Prader-Willi Syndrome and even forms of cancer. By investing in AS research, we have the potential to positively impact the lives of more than 12 million people worldwide.
Biennially, the ASF sponsors a conference that brings families and leading experts on Angelman syndrome together, helping families stay up-to-date on our efforts. Important topics are covered, such as seizures and seizure medication, behavior, sleep issues, therapies and education. The conference also provides a great networking opportunity for families to meet and discuss issues related to their loved one with Angelman syndrome. The next ASF conference will be held at the Walt Disney Swan and Dolphin, July 23rd – July 26th, 2013. The ASF also sponsors an annual scientific symposium that is aimed at informing and educating researchers, professionals and other interested individuals about the origins, treatment and management of Angelman syndrome. Members of national Angelman syndrome associations are encouraged to share their projects, experiences and to stimulate scientific collaboration on research for Angelman syndrome, UBE3A and those affected by mutations of this gene. The ASF Symposium will be held before the biennial conference, July 23 - 24.
The ASF has a number of tools and resources that covers current research, therapies and long-term care for patients, and help with financial planning. You can find this education and information via newsletter, website and phone support.
Download our social media toolkit to help you leverage social media to your advantage! It provides tips for engaging your friends and followers in conversations—with the goal of leading them to action—related to Angelman syndrome.