Spotlight on SMA Awareness Month

Aug 17, 2016
Spotlight on SMA Awareness Month

Each August, the spinal muscular atrophy community marks SMA Awareness Month. Throughout the month, families often undertake special efforts to amplify what is, for most of them, a year-round mission of raising funds and awareness for SMA. They look to draw other family members, friends, neighbors and co-workers into the SMA community by making them aware of the urgency of and hope for a cure.

The Cure SMA community has planned several different activities for this month. They include special events, awareness days hosted by minor and major league baseball teams, social media outreach, proclamations issued by state or local governments, media appearances and more. The community also gathers in groups on the second Saturday of August for a candle-lighting, to remember those who have passed away from SMA and to honor those who are living with the disease.

With so much activity, our challenge is to avoid creating a spark that dies out soon after the month ends. Instead, we consistently look for ways to convert the momentum of August into a sustained push toward our ultimate goal: an FDA-approved treatment for SMA.

This challenge is easier to meet when you consider that the heart of SMA Awareness Month – expanding the reach of our community – is precisely the same strategy that has created much of our success in drug development.

From our SMA Researcher Meeting, which just celebrated its 20th year, to our newly created collaborative industry group, we’ve been successful at drawing academic and industry researchers and pharmaceutical partners into our community.

Our family support programs first and foremost provide families with assistance and hope. They also provide incredible incentives to join together and build a strong and unified community, a community that can then provide drug developers with access to patient data, assistance with clinical trial recruitment, advocates for regulatory decisions and more.

And as more drugs programs have progressed into clinical trials, we’ve also increased our efforts to bring regulators and other governmental partners into our community as well. And we’ve begun laying the groundwork with insurers and other groups who will spring into action when a drug is approved.

This unity between the mission of the awareness month and our overall mission plays out in a number of ways. Most of our pharmaceutical partners also host SMA Awareness Month activities, educating their employees, supporters and other contacts about how they’re working with us toward a treatment and cure. The government officials who meet with our community and issue SMA Awareness Month proclamations can become allies in our work with regulators. And the friends and co-workers who attend awareness events or who are reached via social media can become new voices supporting the need for a treatment and cure. Many of them also donate to support our ongoing work in all these areas.

Though awareness is incredibly vital, it cannot be an end in itself. It must be part of a comprehensive program that keeps us moving toward our long-term goal of getting a drug approved for as many people as possible, as quickly as possible.

Spotlight on SMA Awareness Month

Author

Kenneth Hobby is president of Cure SMA. He leads the organization’s work to develop treatments for spinal muscular atrophy (SMA), the number one genetic cause of death for infants, by merging an impassioned grassroots mission with a sophisticated industry-incentivizing drug development model. He brings an industry and marketing background to this family- and patient-focused organization. Prior to joining Cure SMA, Hobby worked at Pharmacia and deCODE genetics. He has an MBA from the Kellogg School of Management at Northwestern University.

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