ABOUT US

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Our Mission

 

The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

Four-Star Charity


The Angelman Syndrome Foundation has received a 4-Star rating from Charity Navigator for demonstrating strong financial health and commitment to accountability and transparency. Four-star is Charity Navigator’s highest possible rating and indicates that the ASF adheres to sector best practices, executes its mission in a financially efficient way and exceeds industry standards and outperforms most charities in our area of work.  See the Transparency section for financial reports.

Core Programs

 

ASF Family Fund- The ASF Family Fund was created to provide financial assistance to families supporting individuals with Angelman syndrome. Family members can apply for funds that are needed to improve the quality of life for an individual with Angelman syndrome.

 

Counseling Program-  Even though caring for an individual with AS can be rewarding, we know that it can be challenging, stressful and isolating.  Therefore, ASF is proud to offer counseling services at no charge to Angelman families in the United States. 

Counseling Services are available for help in areas like (but not limited to): 

  • Caregiver stress

  • Support with marital problems

  • Substance abuse issues

  • Self-esteem concerns

  • Stress management

 

 

Angelman Syndrome Behavioral Series

This web-based training series was developed to help families deal with the daily challenging and often aggressive behaviors that people with Angelman syndrome exhibit. Prepared by a panel of clinical experts in AS (including psychology, psychiatry, neurology, epilepsy and communication) the series provides access to invaluable help and behavioral information from any device, at any time, any place and at no cost to the user. www.angelmanbehaviors.org. See attached information sheet for additional information regarding this support.

 

ASF Educational Webinar Series and Communication Training Series

Webinars by AS experts on AS-specific topics, including but not limited to research updates, clinical developments and help for daily living and management of AS is available and accessible to all AS families 24/7/365 and around the world.

 

The Communication Training Series was developed to break down often very complex communication training and instruction into smaller, simpler parts, where care providers and their support teams can go at their own pace as they are working with their special person with AS. The series includes training tools and how to use picture symbols, includes downloadable picture and symbol display templates and step-by-step instructions to start and continue a communication program at home and school, no matter the individuals age, skill level or location. The ASF Communication Series was developed by a leading team of experienced communication experts in AS and other non-verbal populations.

 

To date the ASF educational webinar and communication training series have collectively seen over 75,000 views. The series continue to be used extensively throughout the global AS community and a future goal is to translate the ASF Communication Series into Spanish.

 

ASF Family Resource Team and Family Champions

An invaluable resource to AS families, the ASF Family Resource Team is a group of compassionate AS experts who have a child or family member with AS. These individuals serve as a lifeline for AS families, providing guidance and understanding on topics such as health, insurance, finance, education, transportation, technology, durable medical goods and equipment and much more. Resources at a local, state and federal level are provided to AS families across the US. Need advice? Looking for Angelman families that live near you?  Have a frustration or celebration that only another AS parent would understand? Making connections with others in the Angelman community can be very powerful and the ASF Family Champions are available for all of these reasons and more!  These fellow AS family members have volunteered to be available to other families to share their knowledge, experience and lend an ear.  Get in touch and make a new connection today! 

 

 

ASF AS Clinic Network

The Angelman Syndrome Foundation founded the AS Clinics to provide individuals with Angelman syndrome the specialized, comprehensive medical care they need, from birth through adulthood. The ASF has partnered with world-class, leading medical and research institutions across the US to establish AS Clinics to provide comprehensive medical care individuals with AS need, all in one location. Each clinic has its own unique capabilities that leverage a variety of expertise and specialized care available from each partnering organization.

Additionally, all clinics in the ASF AS Clinic Network are working together to establish standards of care for treatment of AS. Clinicians often consult with other clinicians at other network clinics and work together to find the best possible outcomes for their patients.

 

Beyond specialized medical care, the ASF currently funds—and will continue to fund—research that occurs at AS clinic sites. Data gathered from the AS Clinics is, and will continue to be, used to drive research for viable treatments and a cure for AS. The ASF AS Clinic network is THE only clinical framework established to support future clinical trials when they become available by having established sites with AS experts and patients in place. This has always been a part of the ASF research strategic roadmap. The ASF AS Clinic Network is intentional in its abilities to provide high-quality clinical care today, across the AS lifespan, as well as be THE platform for AS clinic trials.

 

Education – Annual ASF Family Conference

 

Since 1991, the Angelman Syndrome Foundation has sponsored 15 family educational conferences and 18 scientific/research symposia that bring together the foremost authorities on Angelman syndrome.

 

The world’s premier research symposia are the proverbial “think tank” that attracts researchers from around the globe who gather and share findings on the latest advances in the field of Angelman syndrome. Rarely seen in scientific meetings, and similar to Gordon-style meetings, the ASF research symposia bring the brightest and best researchers together to share their unpublished data with others in a collaborative environment to push research toward viable treatments and cure forward at a quicker pace.

 

The biennial family conference provides an opportunity for parents and families with an individual with Angelman syndrome to come together to hear and learn about the latest research findings, development in treatments, therapies and management of Angelman syndrome. It also offers time to share and networking opportunities for families who are newly diagnosed to veteran care providers.

 

Investment in Research

 

Just as the Angelman Syndrome Foundation is there to support those living with Angelman syndrome, it also envisions a future in which individuals with Angelman syndrome and their families will no longer be affected by the myriad of medical, behavioral, emotional, financial and practical issues that come with Angelman syndrome.

 

The ASF prides itself on funding the highest-quality research studies from the best AS research institutions, studies that have long-term results to improve the quality of life for people with AS, leading us closer to treatments and a cure.

 

Since 1996, 90 research grants have been awarded by the Angelman Syndrome Foundation, totaling over $14 MM dedicated to research toward therapeutics and a cure. These high-quality research results have leveraged over $140 MM additional expanded studies with the NIH, the DOD, the Simon’s Foundation and other funding sources. Over 100 research studies with researchers spanning the US and 10 countries across the globe. In short, the ASF does not limit its funding to a small group of researchers but seeks out the brightest and best to cure Angelman syndrome.