The Fierce Urgency of Now

“We are now faced with the fact that tomorrow is today. We are confronted with the fierce urgency of now.”

Thus Dr. Martin Luther King Jr. exhorted the nation at the March on Washington on that historic summer day in 1963. While King spoke of long-deferred dreams of equality, today in the FSHD community we are faced with our own pivotal moment. Long told that “there’s no treatment, nothing to be done,” many of you supported the Society in a wild leap of faith, hoping that research would – some far-off day – make possible a treatment or cure. Now, that once-distant dream is tantalizingly within reach.

Therapies are being tested in patients, and while many will fail, some will be effective. There are a plethora of promising ideas but not enough funding to propel them forward. We have done a remarkable job with few resources to build a bridge to clinical trials, but we must do more, and faster, to strengthen that bridge and fill in critical gaps. This is why we have launched our Therapeutic Accelerator Initiative to complete the necessary work that will speed more therapies toward the finish line. And this is why the latest issue of FSHD Advocate celebrates all of you who have taken personal action toward the goal. We are truly facing the “fierce urgency of now,” a call to arms that requires our community to step up as never before.

Issue highlights include:

• The ABC’s of activating
• A landmark forum for the patient voice
• Engage and Activate: Profiles from our community
• A family diagnosis prompted a biotech founder to set his sights on FSHD
• FSHD gene may help tumors evade the immune system
• Newly funded research
• Upcoming events
• The Future is Now