SENATE RESOLUTION 40

(By Senators Nelson and Plymale)

[Introduced February 14, 2024]

Designating February 15, 2024, as Angelman Syndrome Awareness Day at the Legislature.

Whereas, Angelman syndrome is a rare, neurogenetic disorder that affects chromosome 15, resulting in intellectual and developmental delays; and

Whereas, The purpose of Angelman Syndrome Awareness Day is to raise awareness of this condition, mobilize people to action, encourage fundraising, promote research and educational resources, and remember those affected with Angelman syndrome; and

Whereas, About one in 20,000 people in the United States are affected by Angelman syndrome; and

 Whereas, Angelman syndrome is a complex genetic disorder that primarily affects the nervous system.  People born with Angelman syndrome can have a  normal life span, but will require constant care the remainder of their life; and

  Whereas, With early identification and treatment, medical, sleep, seizure, and developmental issues associated with Angelman syndrome may be managed.  As of now, there is no cure for Angelman syndrome, but treatment can be made based on an individual's needs, and may include special education, physical, occupational, and speech therapy and/or medication for seizure control; and

Whereas, The West Virginia Advisory Council on Rare Diseases created the Rare Disease Advisory Council in April 2022, to assist the State in addressing rare diseases; and

Whereas, The Angelman Syndrome Foundation and the Foundation for Angelman Syndrome provide advocacy, education, support, and access to resources for parents and researchers around the world; therefore, be it

Resolved by the Senate:

That the Senate hereby designates February 15, 2024, as Angelman Syndrome Awareness Day at the Legislature; and, be it

Further Resolved, That the Senate hereby recognizes the month of February as Rare Disease Month, and recognizes International Angelman Day as February 15, 2024; and, be it

Further Resolved, That the Clerk is hereby directed to forward a copy of this resolution to the West Virginia Advisory Council on Rare Diseases.