We've taken the impact Austin made on many lives to spread the "Austin 1st Way" with those going through their own rare disease journey. MISSION STATEMENT
Austin 1st Foundation, Champions for Rare Diseases by raising awareness and research dollars to provide support for families in Alabama and beyond.
Founded on April 4, 2019, we are a 501 (c) (3) non-profit public
charity. We are a "Gold" level transparent member of Candid's GuideStar program for non-profits. Research
Awareness
Change
Support
SCOPE OF WORK
Through Austin’s story and other approved children with UBA5 and other rare diseases, we will raise AWARENESS for those with rare diseases and educate the public on the various types. We will serve as a RESOURCE hub for a variety of areas sourced from public and private organizations that provide services for those with disabilities. We will try and provide as many rare diseases tailored support resources as possible. RESEARCH is a major component of our core mission. The Foundation works with the Raiden Science Foundation, Boston Children’s Hospital, and others 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've created a savings fund for research, we give Christmas gifts and handmade blankets & booties to Children’s Hospital of Alabama, East Alabama NICU, Father Purcell Memorial Exceptional Children's Center, provide family support resources through donations of medical supplies and equipment, and other necessities that support families going through medical hardships. We financially support the UBA5 Foundation which helps raise awareness and connect with others that have been diagnosed with UBA5 gene mutation. We are not experts on rare diseases, our goal is to provide meaningful and helpful information to those patients and families in need. We draw on our many experiences with an ultra-rare disease to provide positive support for others in need. 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. That is where the Austin 1st Foundation wants to help bridge the gap to connect more people to information and resources.
