Contract Grant Writer
Spinal Muscular Atrophy
Progress and Future Needs
We have successfully taken SMA from being an often fatal, brutal disease, and the leading genetic cause of death for infants, to now having multiple lifesaving and life-changing treatments available. Today, we have three approved treatments. And 95% of all newborns are screened for the disease and gain access to therapy within a month, all before damaging symptoms can occur. These treatments have had a transformative impact on the disease by targeting the genetic cause.
Goals:
New needs are emerging in the SMA community. With access to treatment, people with SMA are living longer and now need improved local care and customized support programs. The organization's goal is that every person living with SMA has local access to treatments, optimal medical care, and the support they need to live independent, productive, and healthy lives.
Cure SMA is also focused on advancing research for muscle-targeting therapies that work in combination with approved gene-targeted treatments to restore strength and create better outcomes for everyone impacted by SMA.
Overview:
Cure SMA needs to deliver care and new support programs at a local level to all those impacted by the disease where they live, work and go to school. Presently, Cure SMA operates out of a national headquarters in Chicago. The organization is planning to expand its operation in 9 divisions across the US over the next 3 years to better serve the SMA community.
Outcomes:
Local operations will make a tremendous impact to ensure broader access to approved treatments and care for everyone with SMA. This move will allow us to bring advanced care to underserved communities across the country.
Cure SMA has already established a network of 30 SMA Care Centers at leading hospitals across the US, which will expand to 60 with the goal of developing an evidence-based standard of care for SMA. With a local presence, we can better advocate for policies that matter - such as access to employment services, educational programs, and accessible transportation.
Statement of Need
We have a detailed data-driven plan on how to accomplish the next steps to deliver more local support to people with SMA where they live, are now reaching out to secure the resources necessary to make this happen. Cure SMA is seeking $2M to implement this expansion. We depend on our other funders to cover our core budget, which is about $15M -- the funding for this expansion is separate funding.
Requirements:
- Experience in health and human services grants
- Demonstratable success in securing funds for foundations
- Experience in working with grantors both nationally and in local markets
- Experience in corporate, private and family foundations
- There will be no solicitation of funds from pharmaceutical companies for this project