Friday, January 10, 2014
FAST Friday #2
We were given Josh's devastating diagnosis of Angelman Syndrome when he was 17 months old.
We were told he may never walk, he would probably never speak, he would have sleep issues and most likely have seizures.
We were told he would need lifelong 24 hour care.
Josh took his first steps when he was almost 5 years old.
Josh began to walk independently (after surgery to correct tight heel cords and hamstrings) at 7 years old.
Josh is beginning his journey of learning to use an iPad to communicate.
Josh has had to work so hard for every milestone, every physical movement we take for granted.
Josh is the bravest and most determined little boy.
Today, Josh is 9 years old and today, we have hope. We have hope that treatments will be realized that will assist in making his daily life easier. We have hope that one day, a cure for Angelman Syndrome will be found. We have hope because of The Foundation for Angelman Syndrome Theraputics.
Their Mission Statement (taken directly from their website)
The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. The Foundation is committed to assisting individuals living with Angelman Syndrome to realize their full potential and quality of life. We are confident that our goals are now within reach and together, with your help, we will change lives. You are our driving force; please donate generously and bring us one step closer to realizing our mission.
FAST is run by an all volunteer staff and board who dedicate their time and expertise towards finding a cure for Angelman Syndrome. Our operating expenses are generated through our annual Gala and through donations specifically for that purpose. FAST does not have any paid staff. Donations otherwise generated throughout the year go directly to supporting research aimed at finding a cure.
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 and other funding sources.
Take a moment and watch this short video. Then go visit FAST at www.cureangelman.org. Take a moment to read about Angelman Syndrome, read about ongoing research, read about why there is hope for a cure, read how you can be a part of that hope!