Today - May 28th, 2015, I introduced my Private Members' Bill, The Angelman Syndrome Day Act. If passed, this Bill would proclaim February 15th Angelman Syndrome Day, and would help to bring awareness to this very rare and serious disorder.
Angelman Syndrome is a severe neurological disorder that occurs in approximately one in every 15,000 births – although it is commonly misdiagnosed and actual numbers may be higher.
Angelman Syndrome is characterized by developmental delays, lack of speech, seizures and balance problems. Individuals with Angelman Syndrome require life-long care. Angelman Syndrome is often misdiagnosed as cerebral palsy or autism due to lack of awareness.
Na'ama Uzan and the Angelman Syndrome Lemonade Stand Initiative:
Na’ama Uzan, the 5-year old Founder of the Angelman Syndrome Lemonade Stand Initiative, initially set up her lemonade stand to raise research funds for Angelman Syndrome, in support of her big brother Nadav. Through her lemonade stand Na’ama ended up raising $50,000 –far surpassing her $100 goal. Na’ama’s stand raises funding for the Foundation for Angelman Syndrome Therapeutics (FAST).
The Angelman Syndrome Lemonade Stand Initiative was born from Na’ama’s inspiring efforts. This Initiative gathers together children between the ages of 7-11 that are interested in running a stand, and rewards their young fundraisers when they achieve their fundraising benchmarks. The Lemonade Stand Initiative has inspired many others, both near and far, to raise money to find a cure for this disability. Na’ama’s widely garnered support has enabled FAST to create a research grant in her name, titled the Na’ama Uzan FAST-TRAC Grant.
“I'm so happy that having Ontario Angelman Day will get us closer to a cure.” – Na’ama Uzan
For more information or to start your own lemonade stand please visit cureangelmansyndrome.ca/lemonaid or contact my office at 416-325-1404 or firstname.lastname@example.org
Attachments:Angelman Syndrome Day Act Backgrounder Na'ama Uzan and the Angelman Syndrome Lemonade Stand Initiative
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