July 2021: MECP2 Duplication Syndrome Awareness Month

WHEREAS, MECP2 duplication syndrome is a rare genetic neurodevelopmental disorder that occurs primarily in males, with only half of those affected reaching the age of 25; and,

 

WHEREAS, MECP2 duplication syndrome is a lifelong condition characterized by global developmental delay, severe intellectual disability, progressive spasticity, poor muscle tone, seizures, and recurrent respiratory infections; and,
 

WHEREAS, those diagnosed with MECP2 duplication syndrome require significant supportive care and assistance with daily living activities; and,

 

WHEREAS, genetic studies in mice have paved the way for potential treatment strategies that may even reverse established neurological symptoms, creating an unprecedented and historic opportunity to fund the truly life-changing research in front of us; and,

 

WHEREAS, the MECP2 Duplication Foundation (MECP2D.org) along with the 401 Project (curemds.org) are the primary funding sources for MECP2 duplication syndrome research, addressing the full spectrum of this developmental disorder while advocating to improve the quality of life for patients and their families; and,

 

WHEREAS, we must continue our efforts to bring awareness of MECP2 duplication syndrome to the medical community, therapists, teachers, caregivers, and general public, and secure funding for researchers who are dedicated to finding a cure; we support this shared mission now more than ever, and, together, we strive for a world without MECP2 duplication syndrome;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim July 2021 as MECP2 Duplication Syndrome Awareness Month in Michigan.