SMA (spinal muscular atrophy) is a rare genetic condition. I recently became aware of it through a family member with a child who has been impacted. People with SMA are robbed of their physical strength to walk, swallow or breathe. The disorder affects nerve cells in their spinal cord that control voluntary muscle movement. With the muscles not responding to signals from the nerves, they weaken and shrink from inactivity.
One in 11,000 births are affected and one in 50 people is a genetic carrier. There is no cure, but the goal of CURE SMA is to fund research to develop therapies beyond what has occurred in the last 8 years.
Fortunately my family member received a groundbreaking treatment at 15 days old and knows there are now other drugs available. Five years ago she fortunately was born in a state that included SMA in the prenatal genetic screening.
Now CURE SMA has reached a goal of 100 percent newborn screening of spinal muscular atrophy (SMA) in all 50 states with Hawaii at the start of 2024. Receiving early diagnosis of any condition allows one timely access to powerful treatments and cures.
June 2nd there is a CURE SMA Walk-n-Roll event at Villanova University from 9am – noon. Check it out if you are in the area and/or find an event in your area at https://www.curesma.org. Or research spinal muscular atrophy if you wish to learn more. And be sure prenatal genetic screening is accomplished in your state if you know someone having a newborn baby. Always take care of your and your family member’s health!
