Monday, August 27, 2012

Been a little Busy

Been a little busy the past few months. We have been planning the first Jamie Berkley Memorial Golf Tournament,

News Release

Media Contact:
FAST                                                                                     
Melissa Elkins                                                                        
elkins.melissa@gmail.com                                                     
(858) 775-5358                                                                      

Local Family Raises Awareness For Angelman Syndrome

First Annual Memorial Golf Tournament in Honor of Jamie Berkley

Pleasant Hill, Iowa, August 22, 2012 – The first Jaime Berkley Memorial Golf tournament, Sept. 23, at Toad Valley Golf Course in Pleasant Hill, will benefit the Foundation for Angelman Syndrome Therapeutics (FAST) Open registration begins at 7:30 a.m. and there will be a shotgun start at 9 a.m.

Five years ago, at the age of seven, Jamie Berkley lost her battle with Angelman Syndrome. Like most individuals with Angelman Syndrome, Jamie brought joy and happiness to everyone she met and left a legacy of love and laughter. Parents, Jason and Cindy Berkley, have dedicated their lives to bringing awareness to this disorder and honoring their child’s memory with this event.

“We chose FAST because their goal is to bring practical treatments into current medical practices as soon as possible,” said the Berkleys.  “FAST is a non-profit organization, which is 100 percent staffed by volunteers who either have children with Angelman Syndrome or have close relations to the community. All proceeds they raise go directly into research and finding ways to better the lives of families who are afflicted by Angelman Syndrome. They are already making huge advances in research and have recently funded the first-ever human clinical trial for a potential treatment for Angelman Syndrome. The money at our fundraiser is fed directly back into research and awareness. This is why we chose FAST.”

“We are extremely honored to be chosen as the Berkley fundraising beneficiary,” said Paula Evans, Founder and Chairperson. “Our hearts are always heavy over a loss of a child.  We strive to bring more awareness and research to finding a cure for Angelman Syndrome so families will never feel the painful loss of a child to this disorder. FAST is dedicated to its community and works endlessly to cure Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.”

For more information about sponsorships or registration, please contact Jason Berkley at 1-515-202-4091 or jcberkley94@msn.com.


About Angelman Syndrome
Angelman Syndrome is a severe neurological disorder characterized by profound developmental delays, epilepsy, and problems with motor coordination (ataxia) and balance. Individuals with AS do not develop functional speech. The seizure disorder in individuals with Angelman Syndrome can be difficult to treat. Feeding disorders in infancy are common, and some persist throughout childhood. Sleeping difficulties are commonly noted in individuals with Angelman Syndrome. AS affects all races and both genders equally and occurs in approximately one in 10,000 to 15,000 births.  For more information about Angelman Syndrome, please visit http://www.CureAngelman.org.

About FAST
FAST is a Section 501(c)(3) non-profit research organization narrowly focused on funding research that holds the greatest promise of treating Angelman Syndrome.   FAST is committed to assisting individuals living with Angelman Syndrome realize their full potential and quality of life.  To learn more about FAST or to make a donation FAST’s research program, visit www.CureAngelman.org.

Monday, February 13, 2012

Wonderful day for Angels

Today it was announced that the human clinical trials will soon begin for Angelaman Syndrome. I have been kind of delinquent in my post and updates to my blog. Some may call it laziness, I refer to remind myself of how busy our life is. The thought....dream.....prayer for a cure is at times exciting , but more overwhelming emotionally. The Foundation for Angelman Syndrome Theraputics has been working relentlessly to raise the money for the trials. In a matter of a few years we have gone from a dream to one step closer to reality with a CURE!