Keeping in Touch Summer 2013

An update from MDA's CEO

by Steven M. Derks on July 1, 2013 - 9:00am

Quest Vol. 20, No. 3

In my first six months in my new role, I’ve traveled the country meeting with MDA families, supporters, researchers, staff and others who care passionately about our mission. As a result, I’ve come to view the word HOPE in a new way. HOPE is not only the powerful intention to discover lifesaving treatments and cures. HOPE is a commodity that can be measured — in progress.

By far my most powerful encounter with HOPE to date came this spring at the 2013 MDA Scientific Conference (see 2013 MDA Research and Therapies for a video recap of the conference). A real buzz filled the air as hundreds of scientists from different realms of the research world — way more than we expected — came together to share ideas and accelerate the pace of neuromuscular disease research. Or, put another way: to accelerate HOPE.

The conference made one thing abundantly clear — we stand on the brink of an exciting new era of therapy development. Attendees heard it in our speakers’ voices. We saw it in researchers’ eyes, as well as in their PowerPoint presentations. We felt it when husband, father and homeland security consultant Vance Taylor, 35, implored scientists to “give me 50” — 50 years — even though he was told decades ago he wouldn’t live to adulthood because of limb-girdle muscular dystrophy.

Remarkably, there are now more neuromuscular disease drugs in human trials than at any point in MDA’s history. And within the next five years, more new drugs will be in trials than have been tested in the previous 50 years combined.

This is measurable progress — literally, HOPE made tangible.

MDA President and CEO Steven M. Derks

In my opening remarks at the conference, I told the determined scientists crowded into the hall and talking well into the night that we have very high expectations that they will help us fulfill our mission to not only find new treatments, but cures.

At this critical time, the opportunities for impact in neuromuscular disease are enormous. MDA plans to accelerate our all-out effort to raise the funds needed to move from muscle disease to muscle health, to move research from the lab to the living room. In short, to save lives.

Thank you for fighting back with us. In surveys of people who donate to worthy causes, the No. 1 reason they cite for giving support is because they were asked. And so I am asking you — and I also encourage you to ask boldly. The time is now. Let’s keep investing in HOPE, and let’s finish this fight.

Warm regards,
Steven M. Derks
MDA President and CEO

No votes yet
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy