Angelman Syndrome Foundation July-August edition 2014
We are on our way to reaching our $1.2 million fundraising goal in support of the AS community
The Angelman Syndrome Foundation and the entire Angelman syndrome community are incredibly grateful for everyone who attended, donated to, and volunteered in support of the 2014 ASF National Walk. Nearly 10,000 individuals across the country participated in the 30 Walk sites this year, raising hundreds of thousands in support of AS research and direct family support.
We are edging closer to our $1.2 million fundraising goal and need your continued support to reach that goal. Here’s how you can help:
• Ask your employer about matching gifts. Many employers will match employees’ donations to non-profit organizations, and all you need to do is ask!
• Host a fundraiser. With the Walk behind us, use creative ways to raise additional funds, such as bake sales, doing summer chores, dinner parties, and workplace potlucks.
• Send 5 emails to 5 folks asking for $25. Ask those close to you if they haven’t already donated to do so in this smaller increment.
THANK YOU, Rockville Centre St. Patrick’s Parade
During the ASF National Walk on Long Island, the Rockville Centre St. Patrick’s Parade committee presented its $30,000 donation to the ASF amid much fanfare. The ASF was chosen as one of three charities to benefit from funds raised during the St. Patrick’s Parade in March, and other events leading up to the Parade. The ASF is incredibly honored and appreciative to the Rockville Centre community, and all individuals who supported the Parade for their immense contributions in raising funds to support the AS community!
ASF Scientific Symposium in August
The ASF brings together the best and brightest in AS research every year by funding the ASF Scientific Symposium, taking place August 14-16 in Cambridge, commencing the day after Harry Angelman’s birthday on August 13! The ASF embraces collaboration by bringing together researchers of other related disorders to drive further advancements in AS research, and the Dup15 Alliance is joining this year’s Symposium to broaden the scope of research discussed. Researchers will be discussing the current state of AS and Dup15 research to compare findings, discuss best practices, and work to move research closer towards clinical trials.
Funds raised during the ASF National Walk and other events support ASF-funded research grants and the Joseph E. Wagstaff Postdoctoral Fellowship. The Wagstaff Fellowship fosters the brightest and best young researchers in pursuit of AS scientific discovery, and the 2014 call for applications will be issued in the near future. Treatments resulting from the ASF’s $6.2 million investment in research help individuals with AS live better lives today, and that same investment has also discovered pathways towards a cure, leading to better lives tomorrow for individuals with AS but requiring ongoing financial support.
Educational Webinar Series
View Previous ASF Educational Webinars on YouTube
Nearly 2,000 have participated in the ASF Educational Webinar Series, which helps families and caregivers stay up-to-date with a wide range of important topics related to AS, including research updates, clinical developments, tips for everyday living and managing symptoms, and many more. Attendees have the ability to ask questions and interact with the speakers, who are experts in their respective field. Click here to view past ASF Educational Webinars on the ASF’s YouTube Channel, including the most recent webinar by Dr. Art Beaudet who discussed how his ASF-funded research is making significant progress.
Individual Education Plan Bank…Time to Start Planning!
Summer is here, and it is time to start planning ahead for next school year! An Individual Education Plan (IEP) is used in an academic setting for planning and performance evaluation with the educational team assisting your loved one with AS and your family. Development is personal to each individual, even more so with individuals with AS, and a well-crafted IEP can significantly help your loved one stay on track with his or her personal goals. The ASF IEP Bank is a platform to exchange IEP goals and objectives to assist you and your student’s educational team in planning her/his IEP. Click here to begin using the ASF IEP Bank.
Angelman Syndrome Foundation
www.Angelman.org (800) 432-6435 Int’l (630) 978-4245 firstname.lastname@example.org
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