Duchenne, Married Life, Adoption, & A (FULL) Life Worth Living...
Our 2017 conference date/location…
Are you eligible?
Visit www.lgmd-diagnosis.org
<< >>

RSS News

  • Building a Better Future with Shamrocks: Meet Shamrockstar Natalie, the Budding Architect February 22, 2017
    Natalie and her sister Avery do a lot of things together, so it’s no surprise they appear on an MDA Shamrock together. Natalie and her family found MDA when they we running out of hope for answers. Julie, Natalie’s mom, says, “MDA represents a strong community that I struggled to find while she was undiagnosed. […]
  • FirST-4-LEMS Study Seeks Participants February 22, 2017
    Researchers are looking for people with Lambert-Eaton myasthenic syndrome (LEMS) to participate in a phase 3 clinical trial, being conducted by Catalyst Pharmaceuticals, to test the investigational drug amifampridine phosphate. The Firdapse Strength Trial for LEMS, or FirST-4-LEMS, study is designed to evaluate the effectiveness of amifampridine phosphate in controlling, reducing and/or eliminating symptoms of […]
  • No Mountain Too High: Woman With CMT Climbs Mount Kilimanjaro February 17, 2017
    It was winter of last year and the goal was Stella Point on Mount Kilimanjaro — 18,884 feet into the heavens. On the team there were marathoners and ultra-marathoners, mountain climbers and triathletes, and a girl who’d started bagging peaks at the tender age of three. Then there was the woman who would end up […]
  • From Puerto Rico to Summer Camp: Meet Alejandro, the Shamrockstar who Found Hope Thanks to MDA February 15, 2017
    If 13-year old Alejandro had his way, he would attend MDA Summer Camp all year long. The energetic seventh grader from the metro Atlanta area, who is living with Duchenne muscular dystrophy, has many passions; however, summer camp is undoubtedly at the top of his list. During the week he spent at Camp Twin Lakes […]
  • An MDA Summer Camp Love Story February 14, 2017
    For many children with muscular dystrophy, MDA Summer Camp is the highlight of their year. This week is a time when they can have some independence away from their families and try things they may never have done before. At camp, lifelong friendships are formed and great memories are made. I know all about the […]


Personal Info

Create an account (optional)

Donation Total: $0.00

Back to Top