Going Bald for a Cure!

My daughter, Lily, has Angelman Syndrome (AS). I have decided to, along with another Angel Mama, Nicole Young, to shave my head bald, totally bald like a babys bum, on June 1st. My goal is to raise AT LEAST $5,000.00 by that time. 100% of the funds generated here will go to The Foundation for Angelman Syndrome Theraputics (FAST)! Help me reach and surpass my goal and I'll post a video of me getting my BALD ON!

The following is taken from the FAST website. Please visit www.cureangelman.org for more information! 

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

Angelman Syndrome (often abbreviated AS) is a severe neurological disorder characterized by profound developmental delays, problems with motor coordination (ataxia) and balance, and epilepsy. 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.

Individuals with Angelman Syndrome tend to have a happy demeanor, characterized by frequent laughing, smiling and excitability. Many individuals with Angelman Syndrome are attracted to water and take great pleasure in activities like swimming and bathing. 

People living with AS require life-long care, intense therapies to help develop functional skills and improve their quality of life, and close medical supervision often involving multiple medical interventions. Angelman Syndrome may be misdiagnosed since other syndromes have similar characteristics.

Angelman Syndrome is a genetic-based disorder resulting from the loss of function of the Ube3a gene in the brain. Loss of Ube3a prevents neurons from functioning correctly, leading to deficits in learning and memory. Importantly, loss of UBE3A does not appear to affect neuronal development, indicating that neurons could function normally if UBE3A function is restored.
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Organizer

Bronwen Ward 
Organizer
Coatesville, PA
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