The 11-step challenge

At the close of 2018, two adventurers accomplished what heretofore was thought impossible – they each traversed Antarctica solo, unaided, on foot.  One of these intrepid souls, Louis Rudd, when asked what he did to keep going, retold a story about Robert Falcon Scott’s 1912 failed attempt. Someone had calculated that had Scott taken “just 11 more steps a day,” he would have survived. Rudd went on to say that when he was ready to stop for the day, he made himself take 11 more steps.

Eleven steps are not a lot for an Antarctic explorer who has already trod many miles. But when taken day after day, no matter how exhausted one might be, they add up to the distance between failure and success.

Rudd’s story made me think of you and all of the individuals and families in the FSH Society. You are the very soul of persistence. Figuratively, each of you living with FSHD takes “11 more steps” every day by:

• rising hours earlier than others just to get ready for the day;
• planning every move from point A to point B to get there safely;
• trying to stay calm while explaining to someone why you need help;
• fighting fatigue to be the parent or partner you want to be;
• overcoming the sadness of seeing the world becoming less accessible.

When each day demands so much mental and physical grit, how can we do any less?

Because of your persistence, we at the FSH Society have made a commitment to be the catalyst to ensure we have disease-modifying therapies to our families by 2025. To this end, we:

• have hosted the first Industry Collaborative on Drug Development for FSHD. With more than 45 participants representing the FDA, NIH, pharmaceutical companies, researchers, and patients, we have agreed on the path forward to clinical development of new therapies;
• are working with the FDA, our research community, and the biopharmaceutical industry in a concerted effort to open the regulatory pathway to get safe and effective therapies to our families sooner;
• are building a global community of patients, families, and friends that are engaged, empowered, and activated to make a difference in local communities around the world.

To traverse this ─ our Antarctica ─ we must raise and invest $15 million over the next three years.

Knowing that these goals will require extraordinary effort, we have committed to take “11 more steps” at the end of each day. Making one more phone call, engaging one more biopharmaceutical company, or initiating one more project seeking to eliminate an obstacle is how we measure out the distance between failure and success.

I want to challenge us to do the extraordinary. By giving a little more in our spring campaign, sharing your story with someone, or engaging in one of our chapter events, you are helping our community “take 11 more steps.” While your individual contribution might seem small next to the enormousness of our goal, all of us giving and doing our best will make the difference.

Thank you for the support you have provided that has brought us to this moment. And thank you for your continued commitment to making a difference working together to achieve our collective goal – a cure for FSHD.

Taking 11 more steps – together,