Help educate people about spinal muscular atrophy (SMA) and the challenges of individuals with SMA.
Use Cure SMA's new State & Local Advocacy Tool to ask your local leaders to adopt the below resolution proclaiming August 2025 as SMA Awareness Month.
ACT NOW!
INSTRUCTIONS: when you enter your address information, and click on the "send message" button, the prewritten message will automatically be emailed to your city officials. No other action is required. However, you can click inside the prewritten message to tailor it with your own connection to the issue, which Cure SMA may use for other advocacy purposes. Contact advocacy@curesma.org if you have any questions.
SPINAL MUSCULAR ATROPHY AWARENESS MONTH PROCLAMATION - 2025
WHEREAS, spinal muscular atrophy (SMA) is a neuromuscular disease that robs people of physical strength and impacts their ability to walk, eat, and breathe. Approximately 1 in every 50 residents is a genetic carrier. If both parents are SMA carriers, every child they have together has a 25% chance of being diagnosed with SMA.
WHEREAS, SMA was once the leading genetic cause of infant death. Babies born with SMA Type 1 often died before reaching their 2nd birthday. Others with SMA face complex medical challenges and require around-the-clock care.
WHEREAS, recent treatment breakthroughs have reduced the mortality rate and improved the lives of individuals with SMA. However, most children and adults with SMA still face significant health and independence challenges due to debilitating SMA symptoms that occurred before accessing an SMA treatment.
WHEREAS, individuals with SMA and their families seek new research into treatments to gain muscle strength, achieve new motor function, reduce fatigue, strengthen respiratory and swallow function, and decrease dependency on assistive devices such as wheelchairs and ventilators.
WHEREAS, children and adults with SMA rely on public programs such as Medicaid for their healthcare and access to caregiving services and support public policies that break down barriers and promote independence and community living.
WHEREAS, Cure SMA is the national organization that addresses the needs of individuals and families with SMA by funding new research, promoting healthcare best practices, and supporting educational events, independence packages, equipment pools, and advocacy around accessibility and disability rights.
NOW, THEREFORE, I hereby proclaim AUGUST 2025 as SPINAL MUSCULAR ATROPHY AWARENESS MONTH and urge all residents to learn about spinal muscular atrophy and the needs of individuals with SMA. |