Austin 1st Foundation

MISSION STATEMENT
Champions for Rare Diseases by raising awareness and research dollars to provide support for families in Alabama and beyond. #CareAboutRare #UBA5 #Austin1st
Founded on April 4, 2019, we are a 501 (c) (3) non-profit public charity. Austin 1st Foundation, Inc. has no paid employees. We are a “Gold” level transparent member of Candid’s GuideStar program for non-profits. Check out our profile here.

Research
Awareness
Change
Support

SCOPE OF WORK

Through Austin’s story and impact we will raise AWARENESS for those with rare diseases. We draw on our many experiences with an ultra-rare disease to provide positive SUPPORT for others in need. We are not experts on rare diseases, our goal is to provide meaningful and helpful information to those patients and families in need.

RESEARCH is a major component of our core mission. Austin 1st works with the Raiden Science Foundation, the UBA5 Foundation, and other partnered organizations to work towards researching specifically the UBA5 gene mutation. Research may also be in areas to support dystonia, epilepsy, and rare disease in general. Research is needed for better medicines and treatment, improved testing and coordination of getting a diagnosis, more information, clinical studies, and awareness for both patients and the medical community.

CHANGE is needed for improved medical care plans for patients with complex rare diseases, streamlining communication between the medical community and patients, and increased local home care resources for nursing, therapy, and medical supplies. Funds raised through various means will go towards supporting the four areas of our core mission.

We will serve as a RESOURCE hub sourced from public and private organizations that provide services for those with rare diseases. Too many times people don’t know what disability resources are available to them and they simply don’t know whom to ask or even what questions to ask.