Muscular Dystrophy Association - Wings Over Wall Street
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that inhibits the nerve cells in the brain and the spinal cord, ultimately resulting in the inability to initiate and control muscle movement. ALS specifically impedes motor neurons. As voluntary muscle action becomes progressively affected, people often lose the ability to speak, eat, move and breathe. Each year approximately 6,000 people in the U.S. are diagnosed with ALS, and an estimated 16,000 Americans, at least, are living with the disease. Thankfully, the Muscular Dystrophy Association (MDA) works to fight against this devastating disease by funding funding research, providing medical and community services, and fostering education.
The Muscular Dystrophy Association’s 19th Annual Wings Over Wall Street raised money for its effort against ALS. In addition to sponsoring drug development, MDA is responsible for numerous innovations in specialized care for people dealing with muscular dystrophy. MDA supports more than 150 MDA Care Centers across the United States and Puerto Rico; 48 of these centers are designated ALS Care Centers.
MDA was formed in 1950, since then MDA has invested over $165 million in ALS research, with $20 million having been spent in the last five years. MDA just announced that nine new grants totaling upwards of $2.3 million will be awarded to further research and development focused on ALS. These grants will be used for the preclinical development of ALS therapy that is expected to enter clinical trials in 2020 and for the evaluation of a gene-editing tool as a potential treatment for ALS caused by mutations in the SOD1 gene. MDA also funds a sleepaway summer camp in which, every summer, for one week, thousands of children from across the country who have been diagnosed with a muscle diseases are able to attend a camp designed for them. There is one counselor to one camper ratio and the entire week the children, ages 6–17. Campers participate in various activities and games. This camp is successful because of the volunteers that help run it. Along with monetary donations it is of the utmost importance that public becomes educated on matters such a proper disability etiquette and spends time working creating a society where everyone has an equal opportunity. MDA President & CEO Lynn O’Connor Vos stressed the importance of volunteering. She notably stated when volunteering you end up learning and growing so much that it ultimately is not about what you can give to others but what you recieve.
The Wings Over Wall Street event was held at the IAC building located in Chelsea. The event featured a one night showing of sculptures created by artist Jim Condron. His works served to honor his mother, Karen Condron, who passed away on July 14, 2018 of ALS. Karen was a loving mother, entrepreneur, and artist; additionally, she was an active member of MDA, winning the spirit award in 2015. The exhibition, composed of ten pieces, tracked the progression of the disease. One of the sculptures was comprised of various heels owned by Karen -- as her disease advanced the heels got shorter. Every piece was very personal and beautifully constructed to convey the somber reactions that come with processing mortality. Jim mentioned to me that even in the last months his mother never gave up hope; this strength that Karen displayed in her life is reflected in Jim’s art.
The MDA is actively working towards a cure so in the future no else has to experience the pain that comes from living with ALS. Thanks to the people that support MDA there has recently been a wealth of new scientific understanding regarding the physiology of this disease. The event closed with a power sense of optimism and determination.
photo credit: @gregmorrisphotographer