Austin 1st Foundation, Champions for Rare disease 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. EIN 83-4252915. Austin 1st Foundation, Inc. has no paid employees.
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.
MEET THE BOARD
ANTHONY & LINDSEY TERLING
Anthony was born and raised in Montgomery, AL. He received his bachelor's degree in Sports Management from Auburn University of Montgomery and continued on to get a Master's in the same area. Anthony works at Auburn-Opelika Tourism as the Sports and Event Development Manager. He is a member of the Opelika Kiwanis Club, a volunteer in the community, and currently serves as a board member for the Achievement Center - Easter Seals in Opelika, AL. The Achievement Center provides services for those with disabilities in many East Alabama and West Georgia Counties. Anthony and Lindsey attend as many sporting events as possible with their sons and love spending time outdoors.
Lindsey was born in Kettering, Ohio, and raised in Montgomery, AL. She is a graduate of Auburn University of Montgomery with a bachelor's degree in criminal justice and has been working as a software support professional with Medisys, Inc. for over 13 years.
Anthony and Lindsey call Auburn home with their two sons, Austin and Sullivan, their dogs and cat.
Andrea Watson was born and raised in Montgomery, AL., graduating from Auburn University of Montgomery with a Criminal Justice degree. Still living in the area she is an active member of Frazer UMC and enjoys spending time with her fiancé, Frank Hawthorne III, and their dogs. Andrea has worked at Aronov Reality for almost 5 years as a property coordinator. Andrea has always been involved with fundraising for our Austin and is enthusiastic about continuing to raise awareness.
CURT & PAM TERLING
Pamela Terling was born and raised in Montgomery, AL, graduating from Auburn University and gaining her masters at Auburn University of Montgomery. Pam taught 1st grade for 25 years before becoming an Education Specialist/Administrator at The Alabama State Department of Education.
"As Austin's MiMi, this Foundation is important to me because I have experienced first hand the extreme need to raise awareness and provide resources to families and children with rare genetic conditions. Through this journey, Austin has helped me to cherish the small things in life, but most of all to trust in the Lord."
Curtis James Terling was born in Bossier City, LA and raised in Canonsburg, PA and Montgomery, AL. I am a graduate of Auburn University. Curt worked in the Information Technology (IT) field for over 30 years, working from the beginning in software development to an IT Director for the ALEA (formerly the Alabama Department of Public Safety), where I retired after 15 years. I believe this Foundation that Anthony and Lindsey have started is a great outreach for all of those children that are born with rare genetic diseases that need so much more research, funding, and awareness to help treat these children, and give the parents hope for their future.
My goal as Austin’s grandfather is to provide the love, commitment, and energy to help him, his family and all those in similar circumstances. The warm heart that Austin give me every time I see him is my guiding light in helping as many as possible, like him.