Get to Know Us
The Austin 1st Foundation was founded on April 4, 2019, we are a 501 (c) (3) non-profit public charity, with the mission to be Champions for Rare Diseases by raising awareness and research dollars to provide support for families in Alabama and beyond. #UBA5 #Austin1st #CareAboutRare

We are non-profit charity operated by a family that has experienced and endured the journey of having a medically fragile child with a rare disease. A 9-year-old child that ultimately left this earth because of his rare disease, but not without greatly impacting our lives in so many positive ways.

Watch "The Austin Way" Video https://video.wixstatic.com/video/59e467_d185c287ca0b40fa9fe0c7ee572f773c/1080p/mp4/file.mp4

We've taken the impact Austin made on our friends and family to spread the "Austin 1st Way" with those going through their own rare disease journey.

Get Involved - Check our our our annual events and special projects we are involved with here. https://www.austin1stfoundation.org/get_involved

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 as a resource 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 resources for those with rare disease, including: 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. 

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.

Funds raised through various means will go towards supporting the four areas of our core mission.

We are a "Gold" level transparent member of Candid's GuideStar program for non-profits.  Austin 1st Foundation, Inc. has no paid employees. Check out our profile here- https://www.guidestar.org/profile/83-4252915

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