What's happening
This resolution urges the Governor to proclaim May 20, 2017, as Angelman Syndrome Awareness Day in New York State.
Why it matters
Raises public awareness about Angelman syndrome. , a rare neurogenetic disorder often misunderstood or misdiagnosed, which can help increase early detection and support for affected families.
Highlights the need for better access to resources and treatment. for individuals with Angelman syndrome, emphasizing the importance of state support and advocacy for those with rare diseases.
Acknowledges the work of dedicated organizations. such as the Angelman Syndrome Foundation and the Foundation for Angelman Syndrome Therapeutics, which educate, support families, and fund research for treatments and a potential cure.
Encourages community understanding and inclusion. by urging New Yorkers to learn about Angelman syndrome and its impact, fostering a more supportive environment for individuals with disabilities.
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Headline styles
Declare Angelman Syndrome Awareness Day
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Adopted
- Reported to calendar for consideration
- Referred to finance
Full text
1 pageUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
Senate Resolution No. 1349 BY: Senator AKSHAR MEMORIALIZING Governor Andrew M. Cuomo to proclaim
May 20, 2017, as Angelman Syndrome Awareness Day in the State of New York WHEREAS, It is the custom of this Legislative Body to recognize official days that are set aside to increase awareness of serious health disorders that affect the lives of citizens of… Show allHide
May 20, 2017, as Angelman Syndrome Awareness Day in the State of New York WHEREAS, It is the custom of this Legislative Body to recognize official days that are set aside to increase awareness of serious health disorders that affect the lives of citizens of New York State; and WHEREAS, Attendant to such concern, and fully in accord with its long-standing traditions, it is the sense of this Legislative Body to memorialize Governor Andrew M. Cuomo to proclaim May 20, 2017, as Angelman Syndrome Awareness Day in the State of New York; and WHEREAS, Angelman syndrome is a chromosomal (gene-linked) disease that causes neurological problems; the physician Harold Angelman first identified the syndrome in 1965, when he described several children in his practice as having "flat heads, jerky movements, protruding tongues, and bouts of laughter"; and WHEREAS, Infants with Angelman syndrome appear normal at birth, but begin to have feeding problems at 1-2 months and noticeable developmental delays by 6 to 12 months; seizures may often begin before the age of three; and WHEREAS, Speech impairment is pronounced, with little to no use of words; the syndrome is also characterized by hyperactivity, small head size, and movement and balance disorders that can cause severe functional deficits; and WHEREAS, Angelman syndrome is the result of the deletion or inactivation of a particular series of genes that regulate a protein called ubiquitin (UBE3A) on chromosome 15q11-13; and WHEREAS, More than 2,000 persons have been identified with Angelman syndrome in the United States, Canada and other countries in the world, and it is believed that more individuals with Angelman syndrome remain undiagnosed or misdiagnosed; and WHEREAS, 1 out of 20,000 children have this severe neurogenetic disorder that shares symptoms and characteristics similar to those associated with other disorders including autism, cerebral palsy, and Prader-Willi syndrome; and WHEREAS, A broader public awareness of Angelman syndrome has led to a recognition that it is a more prevalent disorder than previously thought and researchers continue to study Angelman syndrome in order to more fully understand its origin, physical signs and symptoms, and behavioral characteristics; and WHEREAS, The Foundation for Angelman Syndrome Therapeutics, and Angelman Syndrome Foundation are dedicated to educating and supporting parents and professionals dealing with Angelman syndrome, and to developing treatments and eventually a cure; and WHEREAS, The State of New York is committed to promoting access to treatment and other resources for persons touched by disorders such as Angelman syndrome, and encourages all New Yorkers to learn more about this and other disorders and the impacts they have on our friends, loved ones, neighbors, and co-workers; now, therefore, be it RESOLVED, That this Legislative Body pause in its deliberations to memorialize Governor Andrew M. Cuomo to proclaim May 20, 2017, as Angelman Syndrome Awareness Day in the State of New York; and be it further RESOLVED, That a copy of this Resolution, suitably engrossed, be transmitted to The Honorable Andrew M. Cuomo, Governor of the State of New York.
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