We believe in the power of community and the importance of building relationships with families going through similar experiences. If you are an individual living with a neuromuscular disease, we invite you and your loved ones to attend our MDA Engage Genetic Testing Webinar. It will broadcast live online on Friday, June 21 from 1 . . .
Researchers at the University of Rochester in New York seek patients diagnosed with Duchenne muscular dystrophy (DMD) who are interested in helping to develop disease-specific patient-reported outcome measures for future clinical trials. This study will help to determine the most critical symptoms of children, young adults, and adult patients with DMD, and as a result, . . .
In 2016, former NFL player Tim Green was diagnosed with amyotrophic lateral sclerosis (ALS) and was private about his new life at first. Over time, Tim has become an advocate for research to find new treatments and cures, and he found strength in his doctor and his family. He shared his story on “60 Minutes” . . .
Just two weeks before her 28th birthday, and after a long search for an explanation for a series of symptoms, Sunny Brous was diagnosed with amyotrophic lateral sclerosis (ALS). Sunny has worked to remain independent and raise awareness to change the future of ALS. Her mantra is, “No apologies, no excuses, no regrets.” Can you . . .
Amyotrophic lateral sclerosis (ALS) is a neuromuscular degenerative disease that causes rapid muscular atrophy. It progresses quickly, and patients need access to all available support as soon as possible. Currently, all ALS patients must wait five months before they can access Social Security Disability Insurance (SSDI) benefits. Because of the fast-moving nature of this disease, . . .
In 2015, Karen Condron was honored with MDA’s prestigious Wings Over Wall Street Spirit Award in recognition of her passion for life — while fighting amyotrophic lateral sclerosis (ALS). It was a battle she fought with grace for eight years, until her passing last July. For years, Karen’s spirit —the namesake of the award — . . .
While most visits to the doctor lead to a quick diagnosis, the same is not so for amyotrophic lateral sclerosis (ALS). On average, getting an ALS diagnosis takes 12 months — a long time, considering that on average, ALS patients live for only two to five years after diagnosis. Some might call the process a . . .
Pat Quinn, co-founder of the ALS Association’s Ice Bucket Challenge, has been advocating for ALS awareness, treatments and a cure since his diagnosis with amyotrophic lateral sclerosis (ALS) in 2013. In 2017, Pat received the Wings Over Wall Street Spirit Award, given to a person who has demonstrated extraordinary commitment and dedication to the eradication . . .
John Schwall, chief operating officer and co-founder of IEX, shares a personal connection in the fight against amyotrophic lateral sclerosis (ALS) as his mother suffered a six-year battle with the disease and later passed from complications related to ALS in 2008. John became an MDA supporter and has played a major role in the success . . .
From the time of his wife’s amyotrophic lateral sclerosis (ALS) diagnosis in 2000, Warren Schiffer and his wife, Toni Diamond, dedicated themselves to raising funds to find a cure. The couple founded Wings Over Wall Street and with the support of MDA have been able to host this annual event to raise awareness and money . . .