Winter 2024

After struggling with finding information,
diagnosis and resources to help their son
Austin with a rare disease, Lindsey and Anthony
Terling were determined to offer assistance to
other families dealing with similar situations.
They created the Austin 1st Foundation (A1F),
“Champions for Rare Diseases,” to raise awareness
and research funds to provide support for
families.
“Austin reminds us that even though he is
gone from his earthly body, he can still give
to others,” Anthony says. “His foundation can
have an impact as he did on many during his
nine short years of life. A1F is how we can turn
this negative into a positive because we always
said that child is a light with the biggest smile.
We were determined to create a foundation to
help others.”
Anthony had worked in nonprofits, and his
and Lindsey’s families had been involved in philanthropy.
In 2018, the Terlings put a business
plan together for the nonprofit charity based
on research for rare disease treatments and
diagnosis, and to create awareness and positive
change for those living with rare disease.
Over the past nine years, they discovered 45
patients with UBA5 Mutation were diagnosed
in different ways. Some received a diagnosis at
44 EAST ALABAMA LIVING
eight months, while others were in their teens.
“Austin was potentially the first documented
known diagnosis in North America,” adds
Anthony, “but that has nothing to do with A1F.
It has to do with the fact that when you have
something that is first in your life, it has priority.
For us that is Austin.
“When we tried to have the first golf tournament,
we had to change course to take care
of Austin as his condition digressed,” recalls
Anthony. “We knew as Sullivan got older it was
going to get harder. He hadn’t started school
and playing sports.”
After Austin passed away July 16, 2022,
Anthony’s mentor Dr. George Schaefer, who
was his professor at AUM in sports management,
talked to him about holding a charity golf
tournament for A1F. Anthony had worked on
a golf tournament that he helped create and
manage to raise funds for women’s basketball
scholarships. Anthony didn’t realize his plans
for that golf tournament would become Aces
Fore Austin.
Dr. Schaefer assured him that he would have
the backing with sports management students
basically doing all the things that go into it, and
then implementing it.
“We knew we had help with A1F and had a
board with family members,” Anthony says,
“and the rest was history. We look at those
things as positive. They were God things. We
didn’t want to lose Austin and my dad two
months later on Sept. 27. My dad and Austin
were connected. When we said Pap Pap, Austin
would have the biggest smile we have seen.”
With plans for the golf tournament, Anthony
talked to Grand National about the charitable
event. AU Network were great partners, and
many organizations, businesses and people
sponsored and promoted it to have awareness
of what they were doing.
“Our focus was funds for research and support,”
Anthony says. “After the expenses, 95
percent would be donated. We have donated
$6,000 of the $22,000 we netted to Raiden
Science Foundation, as they are the key partner
to having the advanced research through
Oregon Health and Science University. They are
doing research on drug repurposing on UBA5
Mutation, which is directly for the condition.
“We are starting to work with other groups
on rare disease as a whole,” Anthony adds.
“Since UAB has the undiagnosed disease program,
$16,000 is being donated to them.”
The next Aces Fore Austin Golf Tournament
will be held June 10, 2024.
Before the Terlings started the foundation,
they used personal funds to donate toys
and gifts to the Children’s Hospital during the
Christmas season, through the Sugar Plum
Shop. Austin went with them a few times to
deliver the gifts. It was a warehouse filled with
toys, including bikes and items for newborns to
18-year-olds.
With A1F, the project is now a fundraiser
named Austin’s 1st Christmas. The website
(austins1stchristmas.org) lists ways companies
and individuals can donate. “It is a way we can
create more awareness for the kids, but also
raise more funds that we can donate,” says
Lindsey.
Founded on April 4, 2019, A1F is a 501 (c) (3)
non-profit public charity. There are no paid
employees, and it is a “Gold” level transparent
member of Candid's GuideStar program for nonprofits.
www.austin1stfoundation.org.