Why Give for Giving Tuesday?

Our spinal muscular atrophy (SMA) community has made great progress, but our work is not over! Through your generous donation, we can and will find a cure for SMA. Your philanthropy powers our mission.

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3 Things Your Donation Does for the SMA Community

1.) Your Donation Supports Newly Diagnosed Care Packages

Most parents don't know what SMA is until their child receives a diagnosis, initially leaving them to feel overwhelmed and alone.

However, that starts to change when their child receives a Cure SMA care package. Every parent with a newly diagnosed child who reaches out to Cure SMA receives a care package with gifts, resources, and tools that have been handpicked by our community to support newly diagnosed children.

These care packages remind parents that they are not alone and that they now have the Cure SMA community supporting them through this journey.

Care package recipient 1
Care package recipient 3
Care package recipient 2

2.) Your Donation Supports Educating Federal and State Policymakers About the Everyday Living Challenges of Individuals with SMA and Their Families

Those with rare diseases, like SMA, can often go unheard or unthought of when it comes to our political leaders crafting and passing legislation. The difficulties the SMA community faces, like accessible air travel, challenges with retaining and affording caregiving services, and marriage savings penalties can largely go unnoticed and unaddressed.

However, that starts to change when your donation helps fund Cure SMA advocacy initiatives.

Just this year our advocacy team:

  • Secured Newborn Screening for SMA in all 50 U.S. states so that children can start treatment as early as possible, increasing their chance of greater mobility and strength as they grow up.
  • Supported and passed legislation to increase air travel accessibility for the SMA community. You can read more about this exciting news here.
  • Created opportunities to bring the SMA community to Washington D.C. so they could bring awareness of the issues facing their community. You can see some of the SMA community members in action below:
SMA community member speaking at white house
SMA advocates at white house
Hope on the Hill

3.) Your Donation Funds Research Toward the Development of New SMA Treatments and a Cure

In 2024 Cure SMA highlighted six new basic research grants totaling $750,000. And we recently announced that another $750,000 will be awarded for additional research, as there remains significant unmet needs, especially for our older and the symptomatic SMA population.

The Importance of Continuing to Invest in Basic Research

  • In two decades, Cure SMA has invested $15 million in funding for 128 basic research grants, furthering our understanding of SMA.
  • Cure SMA provided early funding for projects that resulted in the development of FDA-approved genetically targeted drugs.
  • Basic research funding ensures a robust pipeline that continues to identify potential therapeutic avenues to work in combination with approved treatments, and future treatments that will help restore muscle function.

Help Cure SMA Continue Our Considerable Progress

Through the work of Cure SMA and our SMA community:

  • Over 70 percent of people with SMA are now treated with one of three powerful SMA treatments. 
  • Newborns are now screened for SMA in all 50 U.S. states.
  • There are more clinical trials happening than ever before!

However, our work is not over:

  • We need your help to fund more basic research to develop new treatments that will bring back strength and restore function.
  • We need to remove barriers for the SMA community to live independent, successful, fulfilling lives.
  • We need to continue to support the SMA community with programs and services, like our care packages.

Your Gift Makes a Direct Impact on Our SMA Community

“I live independently with two great roommates and my loving fiancé. I work, socialize, and contribute to my community. I lead a rich, full life. It is by no means easy, but I am proud of what I, with the support of Cure SMA and my family, have accomplished. Donations made to Cure SMA fund the research, education, and resources that help me and others like me achieve our dreams."

Spencer Cook

"Donations to Cure SMA fund information packets, newly diagnosed care packages, and equipment available to be loaned out through Cure SMA’s equipment pool. Without funding, my family would not have had the support or access to adaptive equipment that has been so crucial to helping us navigate life with a child who has SMA."

Amanda Devay

“Donating to Cure SMA will help my daughter, Maya, have a significantly improved quality of life. As Maya transitions to adulthood over the next few years, Cure SMA will be at the forefront of helping her succeed. Your donations help fund research to start more clinical trials and get more drugs to market, allowing individuals like Maya to build strength and live full, independent lives.

Sapna Pringle

Please Consider Making a Meaningful Gift For Giving Tuesday

Your donation will fund breakthroughs in research and treatments for tomorrow and meaningful support programs for today. With your generous donation, together we will create a better future for everyone living with SMA!

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