Author Archives: Isaura Santos

Our Forums moderator Kevin Schaefer shared great advice for making the most out of your time while at home. To discuss, add more recommendations and leave your feedback please join the conversation in our Forums: click here. 1) Read: “Netflix and Hulu are great, but nothing gets your mind going…

BioMarin Pharmaceutical Inc. has recently announced that the United States Food and Drug Administration (FDA) attributed a rare pediatric disease designation for drisapersen, a potential treatment for individuals suffering with Duchenne Muscular Dystrophy (DMD) who are responsive to exon 51 skipping treatment. Drisapersen has been previously granted Orphan Drug and Fast…

Parent Project Muscular Dystrophy (PPMD), a nonprofit organization on the front line against Duchenne muscular dystrophy (Duchenne), has recently announced it awarded Talem Technologies a $70,000 grant to support a pilot study concerning their X-Ar exoskeletal arm technology. This follows PPMD’s launch of their Robotics Initiative that serves to explore devices that have the potential to…

The Muscular Dystrophy Association is offering an exclusive opportunity to those who want to participate in the sold out 2015 Bank of America Chicago and Marine Corps Marathons. The MDA is offering a secure, guaranteed entry by signing up through MDA Team Momentum, the organization’s nationwide endurance program. Space, however,…

Merozyne Therapeutics AB recently initiated a project with the goal of developing a pharmaceutical treatment to address laminin alpha2 chain-deficient congenital muscular dystrophy (MDC1A) through supporting the research that Madeleine Durbeej-Hjalt and Virginie Carmignac conducted at Lund University. Merozyne Therapeutics AB has been established very recently by several entrepreneurial life science firms based at the Medicon…

The 5th Annual Getzlaf Golf Shootout to benefit CureDuchenne will take place on September 12th at Sutra Lounge in Costa Mesa, California and September 13th at the Monarch Beach Golf Links in Dana Point, California. The event will be hosted by the captain of the Anaheim Ducks, …

The FSH Society, a Massachusetts-based charity supporting research into facioscapulohumeral muscular dystrophy (FSHD), has announced that it recently completed the 2nd edition of the FSHD Trial Preparedness Workshop, which was held between May 29 and 30, 2015 at the University of Rochester Medical Center in Rochester, New York. The workshop included over 50 stakeholders from around…

The Muscular Dystrophy Association (MDA) has begun another season of its well known summer camp, marking its 60th year in operation. The MDA summer camp aims to support families by hosting thousands of children struggling against muscular dystrophy and similar conditions that seriously limit their mobility and muscular strength. The summer camp assists kids in helping them…

Jordan McLinn is turning 6 years old and his mom has a single birthday wish: the possibility of watching him grow up and have the opportunity of becoming the firefighter that he dreams of becoming. Jordan suffers from a deadly type of muscular dystrophy, Duchenne, which will begin to immobilize him within a few years and dramatically…

The Indoor Waterpark and opening weekend at Camelback Lodge in Pennsylvania played a major role in making this year’s 28th annual MDA Ride for Life event a major success. The event, which was held between May 1 to 3, raised over $1.1 million to help families that are affected by muscular dystrophy and…