Family members of people with SMA play an active role in managing the daily lives of their loved one – from physical tasks like feeding, bathing, dressing, and more, to mentally-taxing activities like arranging paid caregivers, appointments. and treatments. What impact does this have on the family member?  Cure SMA launched an online survey on December 2nd to better understand so we can provide additional tools and resources to support family caregivers.

“Caring for a loved one with SMA has been described as all-consuming.  It can take a physical, mental, and social toll on the primary family caregiver, as well as the entire family. As important as it is to care and protect a loved one with SMA, it is equally as important for a caregiver to receive support and assistance in their daily lives,” said Lisa Belter, director of data analytics for Cure SMA.

To learn how caring for a loved one with SMA impacts a caregiver’s daily life, Cure SMA in partnership with the Cure SMA Industry Collaboration1 is inviting parents, spouses, siblings, and other loved ones currently caring for an individual with SMA to participate in the online survey2.

Results from the survey will be used by our organization, along with researchers, local governments, and our biotech and pharmaceutical partners — to advocate for support and new programs for caregivers. As a thank you for completing the survey, each participant will receive a $20 e-gift card to an online retailer of your choice3.

The survey closes at 11:59 p.m. on December 12th.  If you would like to participate, but did not receive an email with the link, please email Belter at [email protected].

1 The Cure SMA Industry Collaboration (SMA-IC) was established in 2016 to leverage the experience, expertise, and resources of pharmaceutical and biotechnology companies, as well as other nonprofit organizations involved in the development of spinal muscular atrophy (SMA) therapeutics to more effectively address a range of scientific, clinical, and regulatory challenges. It is currently comprised of our partners at Novartis Gene Therapies, Biogen, Genentech/Roche Pharmaceuticals, Scholar Rock, and SMA Europe. Additionally, the work of the Collaboration is supported by funds provided by Novartis Gene Therapies, Biogen, Genentech/Roche Pharmaceuticals, and Scholar Rock.
2 Residents of the U.S. and Puerto Rico who are non-paid caregivers of individuals with SMA and who have reached the age of majority are eligible to participate in the survey. In the US, the age of majority is 19 in Alabama and Nebraska, 21 in Puerto Rico, and 18 in all other states.
3 Only one gift card will be provided per individual. Cure SMA reserves the right, without notice, to cancel, hold, void, or refuse a participant a gift card if we believe a survey was completed by a non-eligible participant after review. Please allow 2-4 weeks for the gift card to be emailed.