DEAR FRIENDS AND FAMILY,
Each year, I am humbled by your generosity. Through your passion and unwavering determination, you continue to fill my heart, and the hearts of AS families everywhere, with hope, love, support and excitement for the future. The promising advances in research we are seeing, the daily help for families, and the exceptional AS Clinics are all made possible by your heartfelt gifts. I am forever grateful for your support and I hope that you can see and feel the difference you are making. Thank you!
Eileen Braun, Executive Director
Angelman Syndrome Foundation
2017 ANGELMAN SYNDROME FOUNDATION WALK
Over a million dollars raised. Over a million thanks given.
Coordinators, volunteers and participants gather every year at the ASF Walk to raise essential funds for the AS community. Without these dedicated individuals, the ASF Walk and all of the research, family support and education opportunities it funds would not be possible. Our supporters’ hard work and contributions to the ASF Walk touch so many families nationwide.
2017 COMMUNITY FUNDRAISERS
Giving their all for AS
Everyone can truly make a difference. Our community champions, including people like you raised $120,938 through fundraising events across the country in 2017, which can fund a one-year AS research grant! Your dedication has made more research and daily family support possible. We are so grateful for your commitment to finding better treatments and a cure for our loved ones with AS.
QUINN’S HOT COCOA STAND
Driven purely by his love for his twin sister, Emma, who has AS, Quinn—an eight-year-old boy—organized a hot cocoa stand that raised nearly $30,000, which will directly fund more research and much-needed daily support for AS families.
ANDY MEERDO CHARITY GOLF TOURNAMENT
Inspired by his son, Zachary, who has AS, Andy Meerdo hosts an annual Charity Golf Tournament that gathers hundreds of family, friends and loved ones with AS to raise funds and awareness. This year, he also auctioned off a signed NHL Hall of Fame Mario Lemieux jersey. In total, both initiatives raised $13,115 in 2017, and $49,715 since the annual tournament began in 2014.
Drew and Sara Robinson’s son, Luke, was diagnosed with AS in August 2017 when he has barely a year old. Drew and Sara quickly developed a passion to achieve a cure for their son when they started Luke’s Lion’s-a fundraising initiative that has raised more than $11,000 in less than six months, with a goal of raising $1 million. What’s even more amazing is the incredible support the Robinson family has received. Anything is truly possible when your love is so strong that an entire community rallies around you!
Every year, the Keith Olsen Family of Horton, KS – who have a daughter, Ingrid with AS – hosts a tractor cruise in support of all of our loved ones with AS. Their entire community in Brown County, Kansas comes together to support the family’s passion of finding a cure for AS and has raised an amazing $31,645 since 2009!
BORN 2 RICKSHAW RUN
This unique fundraiser, described as an “idiotic adventure to raise money for charity,” involves three-wheeled “rickshaws” traveling across India. This year, this wild and crazy tream of adventurists graciously chose to do it for the AS community!
Team “Born to Rickshaw Run” embarked with no set route and no way of truly knowing if they would make it to the finish line-the only certainty was that they WOULD get lost! Needless to say, they made a huge sacrifice . . . but it paid off bigtime, as they raised nearly $7,000 for a cure for AS!
SUMMIT FOR ANGELMAN II
Kevin Spight climbed to Mt. Everest Base Camp in honor of his friend Kyle Rooney’s son, Madden, who is diagnosed with AS. We are so proud of Kevin’s bravery to climb more than 17,000 feet (that’s 3.3 miles above sea level!) to raise both awareness and funds for AS research. In total, Summit for Angelman trips have raised $13,791 for the AS community.
2016 BANK OF AMERICA CHICAGO MARATHON
Running for a cure for Angelman syndrome.
The Windy City Angels put their bodies through months of intense training to run 26.2 miles, and on top of that they each raised thousands of dollars to help give our loved ones with AS the care and support they need. These runners are truly heroes for our families and we are so grateful!
HOPE IS HERE
Nearly a thousand supporters rallied around the Hope is Here campaign to support the AS Clinics. Because of our supporters, families can meet with specialists, who understand the intricacies and severe symptoms of AS, to effectively address the most serious health concerns of their person with AS. The comprehensive treatments for AS the Clinics provide cannot be found anywhere else.
ASF CURE CLUB
The Cure Club is a dedicated group of monthly givers who are passionate about finding a cure for Angelman syndrome. This very special group of donors truly walk the walk; they choose to open their hearts and commit monthly to achieving a cure for AS…and we are incredibly thankful.
A cure will happen and together we will find it.
In 2017, our supporter’s gifts were used to support exciting, new advances in AS research. In addition to continued funding of research in progress, 2017 research highlighted two new studies: Dr. Steven Gray’s pivotal gene therapy research and Dr. Ben Philpot’s research with new compounds to activate the paternal Ube3a gene. These are giant steps toward a cure for AS and we owe all of this progress to our supporters!
University of North Carolina, Chapel Hill
Gene Therapy in AS
Shared cellular mechanisms in Angelman syndrome and Christianson syndrome
Academic Medical Center
characterization of novel
targets and activators of
Massachusetts General Hospital
Evaluating anxiety in individuals with AS
Geeske van Worden
Understanding the ability for learning improvement if Ube3a is restored in a later life stage
University of North
Carolina, Chapel Hil
Finding new ways of
Auditory brain responses as an indicator of cognitive function in Angelman syndrome
Boston Children’s Hospital
Adaptation of a standardized neurodevelopmental assessment for individuals with Angelman syndrome
University of North
Carolina, Chapel Hill
Pilot study to validate
three novel classes of small
molecules to unsilenced
paternal Ube3a allele
University of North Carolina, Chapel Hill
Pre-clinical assessment of cannabidiol as a treatment for Angelman syndrome