Thank you to all of our heroes and supporters who are truly making a difference on behalf of Angelman Syndrome Foundation. Your fundraising and awareness efforts within your communities is truly inspirational and we gratefully and humbly say thank you for all you do on behalf of all individuals with Angelman syndrome and their families. We are always looking for new stories to share, so if you know someone making a difference in the Angelman syndrome community, write us at firstname.lastname@example.org.
Read how our families are joining in the fundraising and awareness effort to make a difference:
Flagler is a tiny community of roughly 600 residents located in the Eastern plains of Colorado. Yet, this small town recently made a huge difference in the lives of many, including a young boy with Angelman syndrome. Grady Moore is nine years old–he was diagnosed when he was seven–and thanks to the efforts of local high school teacher and Future Business Leaders of America (FBLA) sponsor Pam Fagerlund, a local walk and fundraiser took place in his honor.
“There is a saying that if you want to know how a man will treat his wife, look at how he treats his mother. For me, the truest test is to look at how he treats his sister who happens to have Angelman syndrome.” Jessica Harvey's first encounter with Whitney (del +) was not only a learning experience, but also a shock to her system. “My first memory of walking in the house was being charged by Whitney, his younger sister. Kris managed to intervene in time while I stood there confused and frozen by uncertainty. So much for a warm up, I got thrown in the shark pit.”
The ASF National Walk is a fantastic opportunity for families and friends of individuals with Angelman syndrome to raise funds for AS and make a difference in their community. Yet, for some families, the event is merely a springboard for increased awareness and funds for AS.
When Lea Cardenas' San Francisco State University softball team was asked to adopt a cause for an upcoming game, she didn't hesitate when advocating for one near and dear to her family. Not only would nominating Angelman syndrome allow Lea the opportunity to honor her 4-year-old cousin Caleb, it would also provide a fundraising opportunity for a widely unknown rare disorder.
For Nicole Leitz, the opportunity to participate in a campaign to champion the needs of those touched by rare disorders was made possible by impeccable timing and a dose of divine intervention. In June of 2010, Nicole and her husband Jay heard news that turned their world upside down. Their firstborn daughter, Macy, was diagnosed with Angelman syndrome. “We went through every emotion imaginable when coming to terms with the magnitude of what the diagnosis meant for Macy and her future. Just as difficult was telling our closest friends and family about the fate and future of our little girl. It was just as devastating for them to absorb and comprehend,” commented Nicole.