About Dysautonomia Advocacy Foundation

Click the image above to download DAF’s 2017 Impact Statement.

Dysautonomia Advocacy Foundation was founded in 2014 with the mission to reduce the statistical average of 5 years to diagnose a patient with dysautonomias down to an office visit by implementing integrative research. This research will result in awareness and targeted treatments for those diagnosed with dysautonomias.

As a 501(C)(3) nonprofit based in Charleston, S.C., Team DAF has built an open forum that  encourages those who suffer from the symptoms characteristic of dysautonomia to share their experience with their illness, leading to a higher individual and detailed community understanding. Millions in the U.S. are afflicted with a dysfunction of the autonomic nervous system. These disorders  can come on suddenly due to trauma, illness, or be congenital due to genetics.

Though dysautonomias afflict all ages, ethnicities, races and geographies, they are difficult to diagnose. These illnesses are sophisticated and not well understood in the medical community. Diagnostic criteria remain limited, and the incidence of the various forms is not known. These realities contribute to a lack of focused sophistication within the medical community, making it difficult for many patients to find adequate care or even validation.

How? DAF generates awareness about dysautonomias, funds projects that drive more research and understanding, and develops avenues that lead to the reduction in time to reach a diagnosis, which created greater access to care.

2017 Highlights

In 2017, DAF took great strides in expanding our reach and making a real impact for those affected by dysautonomia. We:

  • Gave a voice to nearly 40,000 people, enabling them to find the latest research, ask questions, share their experiences and know that they are not alone. DAF has built one of the largest online communities for dysautonomia patients, family, friends and caregivers.
  • Established an endowment at Medical University of South Carolina to create a permanent Clinical Chair of Autonomic Disorders. This program will educate generations of medical students with the knowledge needed to recognize, diagnose and treat dyautonomias. These new doctors will disperse into hospitals and practices nationwide — speeding diagnosis — and the MUSC program will become a model for other medical schools.
  • Built strategic partnerships with organizations like The Mighty, a digital health community with more than 1 million registered members, created to empower and connect people facing health challenges and disabilities. Through this partnership, we have greatly expanded our reach to those online affected by dysautonomias — up to 114,000 with a single social media post.

Click to Download DAF’s 2017 Impact Statement

 

 DAF Artraiser 2017

During Dysautonomia Awareness Month 2017, DAF held an art exhibition and sale to raise funds for the MUSC endowment. A total of $10,000 was raised for the program.