Ethan Pyles is one of the toughest 14 year olds on the planet! He lives with his mom Sandra and older brother Mitchell in Pennsylvania. At a very young age, Ethan was diagnosed with Duchennes Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. There is currently no cure for DMD, but Ethan is playing a huge part in finding one.
Duchennes is one of the most common types of muscular dystrophy. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. DMD primarily affects males with symptoms typically starting between the ages of 3 and 5. It is estimated that about 1 in 3,500 boys are born with DMD. Although it is a genetic disorder, Duchennes can develop without any family history of the disease. There are currently several clinical research trials seeking a cure, one of which Ethan is involved in.
The National Multiple Sclerosis Society has had very strong start to the third annual MS Awareness Month. Their “Together We Are Stronger” campaign, a continuation of last year’s theme, encourages people living with MS to share their breakthrough stories. The purpose of this is to show examples of strength and courage to live the best life possible, with the hopes of inspiring the millions of people living with MS.
Rock Steady Boxing is empowering people all around the world with Parkinson’s to fight back! Their non-profit organization has over 300 gyms where people living with Parkinson’s can participate in non-contact boxing fitness classes. Parkinson’s disease is a degenerative movement disorder which can cause deterioration of motor skills, balance, speech and sensory function. It is estimated that over a million people in the United States are living with the disease and another 60,000 are diagnosed annually. With over 16,000 active members using their program, Rock Steady is fighting back!
The United Spinal Association is celebrating 70 years of helping patients overcome serious injuries. Their organization was founded in New York City by a determined group of veterans returning from WWII. They formed a support group to help change public policy and raise community awareness for everyone dealing with paralyzing injuries. Today their organization has grown to include over 60 local chapters who continue to fight for equal employment, access to affordable healthcare and protecting the rights of their members. They continue to work with world class doctors and universities to improve the recovery process and to help prevent future injuries.
The HARK Foundation is on a mission to educate the world about ALS, and provide a network of compassionate resources for families affected by the disease. Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, attacks the nerve cells responsible for controlling voluntary muscles. Over 12,000 people in the United States are living with ALS, which there is currently no cure.
Founder Donna York knows first hand how challenging battling ALS can be after losing her father in 2009. With the support of her 6 siblings she founded HARK to help support others in need and honor her father’s legacy. Charlie “Hark” Dourney lived by the philosophy that you always help others when given the opportunity and to face life’s challenges with courage and dignity. Donna continues to spread her father’s kindness and generosity through several channels including; a free camp for kids whose parents have ALS, funding a scholarship for military families, and purchasing medical equipment not covered by insurance. The biggest piece of equipment she has donated so far is an accessible van to the Gregoire family.