Larry Luxner profile picture

Larry Luxner

At Bionews we’re committed to providing the most accurate, relevant, and up-to-date reporting for our patient communities. Our goal is to ensure that everyone has access to disease-specific information that is both trustworthy and easy to understand. You can read more about our editorial policy here.

Articles by Larry Luxner

August 10, 2018 News by Larry Luxner

From Candle Lightings to Baseball Games, August Marks SMA Awareness Month

At sunset on the second Saturday of every August, it’s a tradition to light candles in memory of those who have died of spinal muscular atrophy — and to honor those currently living with the disease. Cure SMA says the candle-lighting ritual — which this year falls on Saturday, Aug. 11 — is only one way to spread the word during SMA Awareness Month. Others include attending an Awareness Day with a local major or minor league baseball team, requesting a proclamation from state or local government, hosting an awareness-themed fundraiser, contacting local media or celebrities, and participating in social media awareness efforts. Upcoming baseball games with an SMA Awareness Month theme will be sponsored Aug. 19 by the Chicago White Sox at Guaranteed Rate Field; Aug. 20 by the Boston Red Sox at Fenway Park; Aug. 24 by the Arizona Diamondbacks at Chase Field in Phoenix; Aug. 26 by the New Hampshire Fisher Cats in Manchester; and Aug. 26 by the Tampa Bay Rays at St. Petersburg’s Tropicana Field. SMA, the leading genetic cause of death for infants, affects the motor nerve cells in the spinal cord, robbing patients of the ability to walk, eat or breathe. About one in 11,000 babies is born with SMA; nearly eight million Americans are genetic carriers. Cure SMA had a major breakthrough in December 2016, when the U.S. Food and Drug Administration (FDA) approved  Spinraza (nusinersen), manufactured by Biogen. The FDA approved Spinraza without restrictions, and insurance generally covers 90 percent of cases for types 1, 2 and 3. Cure SMA now represents about 7,000 of the nation’s estimated 10,000 SMA patients, according to a recent speech by its president and CEO, Kenneth Hobby. The Chicago-based nonprofit — founded in 1984 — operates on an annual budget of $11 million. Hobby said it has spent $70 million to date on research, and some 4,000 families benefit from its services, Each year, the organization asks supporters to submit their SMA Awareness Month photos to its Facebook page. The group can also be tagged on Twitter and Instagram using the #cureSMA hashtag. Alternatively, photos may be emailed to [email protected] with “SMA community album” in the subject line. For more information, visit Cure SMA’s events calendar, download an awareness and advocacy kit (including key information about SMA that can be useful when composing a blog post or sponsor request letter), or request a medical professional awareness kit to share with primary care providers, neurologists, nurses or therapists. In Australia, where the government recently authorized insurance coverage for Spinraza for people under 18, Melbourne-based SMA Australia will host its inaugural SMA 24-Hour Challenge on Aug. 30. The organization supports people living with SMA through its cough assist and well-being programs, as well as through palliative care. “Our federal government has done an incredible job to make the drug accessible to children, but more needs to be done for adults,” said SMA Australia CEO Juli Cini, who lost two children to the disease. “I encourage everyone to get behind our 24-Hour Challenge, which will further help us in our work that supports Australians living with SMA and their families.”