Denver Joins 12 Other US Cities Hosting The 2005 Angelman Syndrome Foundation National WalkAThon Saturday May 21



May 17, 2005 -- This Saturday, May 21, 2005, Metro Denver will host its first Angelman Syndrome Foundation (ASF) Walk-A-Thon. The 1.3-mile walking event will be held at the Adams County Regional Park (Fairgrounds), 9755 Henderson Road, Brighton, CO 80601. Registration begins at 8 a.m. and the Walk-A-Thon starts at 9 a.m. Other cities hosting the 2005 ASF Walk-A-Thon include: Atlanta, Chicago, Detroit, Jacksonville (FL), Orange County (CA), Philadelphia, Phoenix, Pilot Mountain (NC), Pittsburgh, St. Louis, Syracuse (NY), and Washington, D.C. This is the seventh year nationally for the event.

Registration information is available by calling 1-800-432-6435, or checking online for registration information at http://www.angelman.org/angel/index.phpid=182. Sponsors of the first-time event in Metro Denver include Brighton Early Rotary Club at the supporting level; and Lakewood Chiropractic Offices PC, Bradford R. Miller MD, PASCO, and Valley Bank and Trust at the Enduring Level. The local coordinator is Cindy Snyder (e-mail protected from spam bots).

Last year, thanks to the work of hundreds of volunteers, the 2004 ASF National Walk-A-Thon enjoyed its most successful walk in event history. Over 1700 participants in ten cities across the country joined forces to raise awareness of Angelman Syndrome and raise funds for the ASF. Total dollars raised including participant funds, corporate & business sponsors and employee matching funds totaled $366,100 through the July 2004 tally.

Angelman syndrome (AS) is a genetic disorder which causes severe developmental delay. It is caused by a missing or "faulty" genetic code on chromosome #15. The most striking symptoms are mental retardation, a severe speech disorder (in most cases, lack of speech), motor difficulties, a short attention span as well as some behaviorally unique features such as hand flapping, hypermotoric behavior, an easily excitable personality and a frequently happy demeanor. In addition, some individuals with AS exhibit a suck/swallowing disorder and/or frequent tongue thrusting, sometimes accompanied by drooling. Other common features include wide-spaced teeth and hypopigmentation (lighter skin and hair than their family members).

Some of the most difficult issues faced by families and caregivers include the common onset of seizures during childhood, a difficult sleep pattern (individuals with AS often seem to need hardly any sleep at all), and communication. Communication is an especially complex issue, because even though most AS individuals don't have any speech at all, they understand a lot of what is said to them. In order for them to be able to express themselves, alternative methods of communication have to be established, which can be a long and difficult process.

AS is difficult to diagnose and in the past has often been miss-diagnosed with other developmental disabilities, such as cerebral palsy and autism. AS has been reported throughout the world among divergent racial groups. In North America, the great majority of known cases seem to be of Caucasian origin. Although the exact incidence of AS is unknown, an estimate of between 1 in 15,000 to 1 in 30,000 is the norm.

Thus, statistically, there are between 155 and 310 estimated Angleman cases in the State of Colorado, of which 86-172 would be in the Metro Denver area.

A local case study can be found at http://www.OurAngelTyler.com about a Henderson, CO, four-year-old named Tyler Davis. Tyler was diagnosed with AS at 16 months of age, three months after his seizures began. As you'll read at the website, Tyler's parents have diligently sought extensive early intervention therapies such as speech language pathology (SLP), occupational therapy (OT), physical therapy (PT), a type of therapeutic horse riding therapy called hippotherapy and preschool, which have all helped Tyler to achieve dramatic improvements in his ability levels. Tyler has also been on the medically supervised Ketogenic Diet. His seizures have abated during the past 21 months that he has been on the special diet.

About ASF
ASF's mission 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. The foundation sponsors AS research through grants to researchers pursuing promising avenues of discovery. Since 1996 more than $250,000 has been awarded via 13 grants. In late 2004 the ASF Board approved the solicitation of grant proposals totaling an additional $200,000 in grant funding. The foundation may be reached at 1-800-432-6435 or by email at e-mail protected from spam bots. The website is http://www.angelman.org.





Denver Joins 12 Other US Cities Hosting The 2005 Angelman Syndrome Foundation National WalkAThon Saturday May 21