All financial gifts are invested wisely, and only 6.6 percent of expenses are spent on general and administrative costs. Our noteworthy efficiency means there is more money to support critical research. And, we don’t just write checks. FAST has set the research agenda for Angelman syndrome from bringing together a multidisciplinary team of more than two-dozen scientists from top research universities and pharmaceutical companies to join forces on a focused path to a cure to ensuring potential therapeutics do not languish in the laboratory. FAST formed the subsidiary GeneTx Biotherapeutics in order to move preclinical work on an antisense strategy to treat Angelman syndrome from the laboratory and into clinical development. FAST is the first rare-disease patient organization to take this approach. GeneTx is the very first company to trial a potentially disease-modifying drug in this patient population.
Whereas most rare disease patient organizations would begin to relax and wait (and pray) for the results of their decisions, strategies and hard work to pay off, FAST is poised to work harder than ever to create meaningful change in the Angelman community.
All of the advancements in Angelman syndrome as well as FAST’s mission, would not be possible without the continued support of our community. All of us at FAST remain enormously grateful for your support and look forward to the many advancements that lie ahead.
Now is the time for action. FAST’s Roadmap to a Cure is bold, ambitious, and, with your help, achievable. Please join us by making a financial gift, spreading the word with friends and family members, and fundraising to help us cross the finish line. Our ultimate goal is to successfully complete this race – and no longer be necessary – by finding a cure.
Paula M. Evans
PO Box 608
Downers Grove, IL 60515
FAST is run by an all-volunteer board of Angelman syndrome (AS) parents and professionals dedicated to finding a cure for AS and related disorders through the funding of an aggressive research agenda. The foundation is committed to assisting individuals living with Angelman syndrome to realize their full potential and quality of life. Our goal is to bring practical treatment into current medical practice as quickly as possible. It is our hope that grants we fund will lead to additional research support from government agencies, other funding sources and organizations around the globe. FAST is served by two boards: the board of directors and the scientific advisory board. Together, we are working hard to bring practical treatment into current medical practice as quickly as possible.
We are 100 percent committed to accelerating treatments and a cure for Angelman syndrome (AS). The symptoms of AS have been under-addressed in the research community for far too long. Research aimed at identifying treatments for the motor dysfunction, seizures and behavioral characteristics of Angelman syndrome is one of FAST’s top priorities. FAST takes pride in investing in high-risk, high-reward research grants that have already produced positive and promising results. A cure for AS is now within reach but will require the expertise and collaboration of the best and brightest minds from a variety of fields in science and research.
In 2013, a true research collaboration and the infrastructure required to advance a cure for Angelman syndrome, was nonexistent. FAST addressed this challenge by creating the first-of-its-kind FIRE Initiative (FAST Integrative Research Environment), which funds more than two-dozen scientists from top universities to work collaboratively to identify, characterize and implement new therapeutics for the treatment and ultimate cure for Angelman syndrome. The FIRE Initiative is the most aggressive research program to date dedicated to finding a cure for AS.
For decades, small, non-profit disease research organizations like FAST have modeled their funding philosophies after the National Institutes of Health (NIH) where they budget their research dollars, put out a once-a-year call for applications, wait for scientists to come to them with ideas, select the most promising applications and hope they actually see results. FAST is not at all interested in this slow, linear approach to funding research and instead adopted the innovative model of venture philanthropy, recruiting a stellar in-house team to work in partnership with leading scientists on ambitious, high-risk/high-reward study designs that will ensure promising therapeutics make it from the laboratory bench to the patient’s bedside as quickly as possible.
Adopting a business model where we have input and control over the direction of the research, FAST assembled an in-house team of experts in science, medicine, business management, finance, law, accounting and technology. In addition to funding research grants, including over $360,000.00 in Postdoctoral Fellowships, FAST has also entered into contracted research on targeted projects with well defined milestones and deliverables.
Angelman Syndrome is currently one of the most promising fields of scientific research; relying solely on investigator-initiated research to identify and implement patient treatments is inefficient and short sighted. Additionally, true collaboration of researchers working cooperatively is the only successful approach to treatment science.
In January 2011, FAST contracted research with Dr. Edwin Weeber to test four FDA approved compounds in our mouse model. One of those compounds, Minocycline, showed promise in treating some of the symptoms of AS. With additional funding and testing, Minocycline was identified as a candidate for human clinical trial. FAST provided the funding for the trial in 2012 and we anticipate results to be published soon.
In May of 2013, FAST launched the most aggressive Angelman research initiative in history, bringing 24 researchers from 4 universities together in true collaboration to identify additional treatments and a cure for Angelman Syndrome. The FAST Integrative Research Environment (FIRE) Initiative has already identified several possible treatment candidates for human clinical trial. FAST will continue to either fund small, proof of concept trials that will better position the Angelman community for larger FDA funding and/or partner with pharmaceutical companies to bridge the so-called “Valley of Death” in translational research.
FAST has proven the success of our funding philosophy in a very short amount of time and with relatively little funding. It is not about how much you spend, but rather how you spend it. FAST is funding smarter, faster science and with proper funding, a cure is now just within our reach.
FAST is served by two boards who work together to bring practical treatments into current medical practice as quickly as possible.
Paula earned a Bachelor of Science degree in architectural technology from the New York Institute of Technology. Her career focused on residential and commercial property management in both Manhattan and Chicago. Paula oversaw the management and title transfer of multimillion-dollar properties, and handled all property negotiations, purchasing, construction/renovation projects and staff supervision. Her portfolio contained some of the highest-profile buildings and entities in the above-mentioned cities. Paula has two children. Her daughter, Ainsley, has Angelman syndrome.
Allyson is a veterinarian in New York City. She received a bachelor’s degree and doctor of veterinary medicine degree from Cornell University. She is a member of the American College of Veterinary Internal Medicine and is a specialist in internal medicine and interventional radiology/interventional endoscopy. She is a director of interventional endoscopy at one of the largest specialty animal hospitals in the world. She has spent the last 10 years performing clinical research and designing various clinical trials to develop and evaluate novel therapeutics and medical devices in dogs and cats. Allyson has three children. Her daughter Quincy has Angelman syndrome.
Kelly received a Bachelor of Science degree in biology and Master of Arts degree in communication sciences and disorders from the University of Central Florida. She is a member of the American Speech-Language Hearing Association (ASHA) and holds a license to practice speech-language pathology in the state of Florida. She works at a local hospital as an acute care speech-language pathologist and at the University of Central Florida as an adjunct clinical educator. Kelly’s career is focused on the evaluation and treatment of dysphagia and cognitive/communication disorders resulting from acquired brain injuries in adults. She has conducted research and presented at the national level. Kelly lives in Orlando, Fla., with her husband, Brian, and their son, Colin, who has Angelman syndrome.
John is the owner of Frontline Commercial Real Estate, LLC, where he develops, acquires, finances, and leases retail and industrial commercial real estate. Concurrently, his manufacturing business, Keder Solutions LLC, designs, manufactures, and distributes textile reinforcement products internationally. Prior to this, John led his family business to become the largest manufacturer and installer of temporary structures. A few notable clients include Walt Disney World, NFL/Super Bowl, IMG/New York Fashion Week, and the 2010 Vancouver Winter Olympic Games. John’s daughter Grace has Angelman syndrome.
Bryan is a partner in the Los Angeles office of Barnes & Thornburg, LLP, a law firm with offices across the United States. Bryan focuses on corporate and entertainment matters, where he heads the firm’s television and digital media practices. Bryan also focuses on corporate finance, startups, and mergers and acquisitions. Prior to joining the Barnes and Thornburg, Bryan served as in-house counsel for companies both large ( Fox and Yahoo!) and small (BermanBraun later known as Whalerock Industries). Bryan has a bachelor’s degree from the University of Texas, where he graduated with honors, and a Juris Doctor from the University of North Carolina, where he was a Chancellor’s Scholar. Bryan lives with his family in Los Angeles, California. Bryan’s son, Finn, has Angelman syndrome.
Amelia Beatty received her undergraduate degree from Wellesley College and her Master of Arts degree at Sotheby’s Institute of Art London. Amelia has lived and worked in San Francisco, Boston, London, Los Angeles, Shanghai, China; Brazzaville, Congo and Algiers, Algeria. Her diverse jobs have included catering, managing an art gallery, managing security for diplomats, and working with the U.S. Department of Defense. Amelia and her husband have three sons. Their middle son has a congenital heart defect and apraxia of speech. Their youngest son, Orion, has Angelman syndrome. Becoming fluent in French while living abroad, Amelia and her husband decided to have a bilingual family, and have largely succeeded in spite of the communication challenges with two of their children. Amelia and her family live in Amman, Jordan.
Roy received a Bachelor of Science degree in economics from The Wharton School at University of Pennsylvania, where he graduated magna cum laude. He is owner and corporate manager at Lafayette S.A.S., a vertically integrated, state-of-the-art, textile manufacturing and distribution company, which was founded in 1942 and has customers in 24 countries around the world. Roy grew up and lives in Bogota, Colombia. Roy has three children, his daughter Michelle has Angelman syndrome.
Kristy is an international program manager for Lockheed Martin in Orlando, Fla. Kristy has worked at Lockheed Martin since 2002 in various customer-facing positions within engineering, business development and program management. Her strengths in building personal customer relationships, developing and executing win strategies, and leading cross-functional teams has enabled her to find solutions that meet customer needs resulting in the award of significant customer funds. Kristy earned a Bachelor of Science degree in computer and information sciences from the University of Florida and a Master of Science degree in computer science from the Florida Institute of Technology. Kristy has a daughter, Grace, with Angelman syndrome.
Meagan has a background in information science operates a geographic information science consultancy with experience in data development, management, analysis and presentation. Meagan also runs a business in Far North Queensland Australia with her husband, Rohan. In addition, Meagan is chairperson of sister organization FAST-Australia and the founder of the Global Angelman Syndrome Registry. Meagan has two children. Her daughter Molly has Angelman syndrome.
David is the Founding Chair of the George B. Delaplaine Jr. School of Business at Hood College. He has a B.S. in computer science from Frostburg State University, an M.S. in computer science from Hood College, a Ph.D. in information systems from the University of Maryland, Baltimore County, and is completing the business analytics program at the Harvard Business School. A child of the Internet, he grew up on AOL, programmed his way through dot com, and now helps develop and empower communities across a variety of social media platforms. David has twin boys; his son Chandler has Angelman syndrome.
Kena is a certified public accountant with The Church at Horseshoe Bay. Prior to assuming a local accounting role to spend more time with her family, she worked at Pricewaterhouse Coopers LLP in the Assurance Practice. She provides audit services to a Fortune 50 technology company as well as other smaller private companies in various industries. She received a Bachelor of Business Administration degree in accounting from Southwest Texas State University and graduated magna cum laude. Kena is a member of the American Institute of Certified Public Accountants, Texas State Board of Public Accountancy, and the National Association of Church Business Administration. Kena has three children. Her daughter Ashley has Angelman syndrome.
Alice earned a Bachelor of Science degree in business administration from the State University of New York, Empire State College. Her career focused on accounting in both Manhattan and Chicago. Alice spent most of her career in Manhattan working for Morgan Stanley in the Controllers department. She currently lives in Chicago and has a niece with Angelman Syndrome.
Speciality: Pediatric Psychology, Pediatric Psychiatry, Developmental Behavior
Colin Farrell speaks about Angelman syndrome, the Foundation for Angelman Syndrome Therapeutics and the FAST Gala.
In an age where Angelman syndrome therapeutics are being developed on a global scale, FAST is working to make sure communities across the world are organized and prepared to participate in studies for potential therapeutics. FAST is committed to bringing the Angelman syndrome community the most current updates on research and clinical trials. Hear from each country’s FAST chairperson in this video and learn more about how they are all advancing Angelman syndrome research and clinical trials.
FAST has affiliates in Australia, Canada, France, Italy, Spain and the UK.
FAST (Foundation for Angelman Syndrome Therapeutics) is an Internal Revenue Code Section 501(c)(3) nonprofit charity, exempt from federal taxation. Transparency is both a requirement and an obligation that is also vitally important to our members.