Cure SMA recently published a 2015 review of its advocacy work, highlighting the programs it provides to families living with Spinal Muscular Atrophy (SMA) that aid in caring for those with SMA and offering the emotional support of a unified community who understands the struggles of the disease.
In its efforts to support the continued search for better treatments and cures for SMA, the organization stated in its review that it will continue its work to improve the lives of those already living with the disease as well as those who were recently diagnosed. It is estimated that 1 in 10,000 newborns or 1 out of every 50 adults carry the SMA gene. As part of the organization’s work throughout the year, Cure SMA organizes an Annual SMA Conference, and this year alone provided 1,274 Care Packages and Information Packages, while also lending out 296 medical devices from the organization’s Equipment Pool.
2015 highlights include:
- The distribution of 126 CDs of SMA information to international families;
- The giveaway of 98 wagons for families to transport their children around the house, the yard, to visit friends and family or to get to their doctor’s appointments;
- A total of 1,324 attendees, of which 276 were leading researchers in the field, at the 2015 Annual SMA Conference;
- A five-year review that reports more than 1,650 newly diagnosed families who received Cure SMA contact and support;
- An annual increase of the support items sent to more than three times the families as the previous year.
This year also saw the launch of several new initiatives designed to address the changing needs of SMA patients and their families, namely:
- The release of a New Care Series Booklet on the clinical trials process;
- The welcoming of Mary Schroth, M.D., to Cure SMA’s team as a Medical Professional Education Consultant. Dr. Schroth is now working with the organization to find out the best ways to advise and educate medical professionals on SMA, so that families’ access to care can improve every day.
Those who wish to ask questions, receive guidance and emotional encouragement, access further information, or just get to know Cure SMA’s mission can contact any of their family support programs at 800.886.1762 (FREE) or email [email protected].
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