Posted on February 28, 2018
State Representative Dave Yaccarino (R-87) joined Hunter Pageau and his mother Sharon Agli-Pageau at the State Capitol’s Rare Disease Day on Wednesday, February 28 to assist in raising awareness for Spinal Muscular Atrophy with Respiratory Distress (SMARD) and other rare diseases.
SMARD is a severe, inherited neuromuscular condition that specifically affects nerve cells in the spinal cord called lower motor neurons. Usually, signals from the brain are sent via the spinal cord along the nerve cells and through to muscles. This makes it possible to consciously contract the muscles and to make them move. In SMARD, the lower motor neurons degenerate, impairing the link between the brain, the spinal cord and muscles. These muscles can no longer be stimulated, which causes them to waste (atrophy).
“Hunter and all of the other individuals living with a rare disease continue to be an inspiration to me. I believe it is critical that our state provide support for rare diseases like SMARD and others. I can’t be more proud of Hunter and his family; they work hard to advocate on behalf of SMARD. As a lawmaker, I will continue to promote bioscience and research. We must continue to work to find a cure for SMARD and the other rare diseases that do not yet have FDA-approved treatments,” said Rep. Yaccarino.
According to information from the National Organization for Rare Disorders (NORD), in the United States, any disease affecting fewer than 200,000 people is considered rare. Nearly 30 million Americans have a rare disease, which is 1 in 10 Americans. There are about 7,000 rare diseases and fewer than 500 have FD- approved treatments. Among residents in Connecticut, it is estimated that estimated 357,000 residents are living with a rare disease.
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. The goal of Rare Disease Day, organized by NORD is to foster collaborative efforts across all stakeholders, especially government, to increase awareness, improve care support, encourage research, and advocate resources- financial and others- to address this growing population- in hopes for a healthier community.
For more information visit https://rarediseases.org/.