Duchenne, Married Life, Adoption, & A (FULL) Life Worth Living...
<< >>

RSS News

  • Impassioned by Science, Motivated by Love: Behind the Scenes at the 4th Annual Strength, Science and Stories of Inspiration October 20, 2017
    Earlier this month, I attended the 4th annual Strength, Science and Stories of Inspiration event at MIT’s Kresge Auditorium in Cambridge, Massachusetts. As a co-organizer and patient with dysferlinopathy/miyoshi myopathy, I am proud to see what this event has become in four short years. Strength, Science and Stories of Inspiration (SSSI for short), which I wrote […]
  • Louisiana Family Puts Their Own Spin on MDA Fundraising October 19, 2017
    George Wood is the official taste-tester for the annual MasterVac Industrial Services Jambalaya Benefit in Baton Rouge, La. He picks the best pot — one of many made up by his dad, Damon, MasterVac co-owner, and the business’ employees — each year. The benefit is in honor of George, who lives with limb-girdle muscular dystrophy […]
  • FDA Grants Orphan Drug Designation to Amicus Therapeutics’ Experimental Combination Drug for Pompe Disease October 19, 2017
    The investigational combination drug therapy ATB200/AT2221, under development by Amicus Therapeutics to treat Pompe disease (acid maltase deficiency or AMD) has received U.S. Food and Drug Administration (FDA) Orphan Drug Designation. Amicus Therapeutics’ combination drug strategy pairs ATB200, a unique synthetic human acid alpha-glucosidase enzyme, with pharmacological chaperone AT2221, which helps protect the ATB200 drug […]
  • Up and Coming Fashion Designer with LGMD Thrives October 18, 2017
    Tobie Roberts, an up-and-coming fashion designer with a passion for bridal, pageant and prom gowns, knows the importance of creating garments that make women feel confident and beautiful. Equally as important, Tobie, who lives with limb-girdle muscular dystrophy (LGMD), knows the importance of making these designs accessible, inclusive and easy to wear. “I started sewing […]
  • A Close Friend Finds Inspiration in MDA Team Momentum October 17, 2017
    It’s hard to believe that I’ve been out of college for almost as long as I was in it. A lot has changed since graduation. I continue to grow as a person and my career continues to transform but one constant remains: The friends I made at Colorado State University are still by my side. […]


Personal Info

Create an account (optional)

Donation Total: $0

Back to Top