Promote Awareness
Fund Research
Find Hope
The Andersons started the A.J. Anderson Foundation after their son, Drew, was diagnosed with Tay-Sachs disease.
About
Promote Awareness
The AJ Anderson Foundation was born out of a moment when hope was out of reach, a reality some 30 million Americans with rare disease are currently faced with. In 2016, Brianne and Adam Anderson were devastated by their son Andrew’s diagnosis of Tay Sachs disease. Determined to fight for answers, Brianne threw herself into every possible avenue of research, only to discover that no cure existed. Out of this painful reality, the Andersons created the AJ Anderson Foundation—a beacon of hope for families facing the unimaginable. Even after Andrew’s passing in 2019, they remained steadfast in their mission, continuing to drive forward the boundaries of genetic research in his honor.
Today the foundation is working with State and Federal leaders to end the diagnostic odyssey for families affected by rare diseases by expanding access to genetic testing especially whole genome sequencing (WGS) in Florida and beyond. This work led to the creation of the first of its kind “Florida Institute for Pediatric Rare Diseases” at Florida State University and the “Sunshine Genetics Newborn Screening Program” offering comprehensive genetic testing at birth free of charge at select Florida hospitals giving parents the option to screen for over 700 genetic conditions and the opportunity for rapid treatment.
Our goal
To give every child born with a rare disease the best opportunity for a long healthy life.
Recent Advocacy Accomplishments
- The Florida Department of Health’s “Andrew John Anderson Pediatric Rare Disease Grant Program”– supporting research institutions & universities working on cures for rare diseases
- The “Andrew John Anderson Rapid Whole Genome Sequence Grant Program”– to help quickly diagnose children with complex medical conditions
- Legislation to allow parents and caregivers of medically fragile children to be paid
- Legislation to add Duchene Muscular Dystrophy to the State Newborn Screening Panel
- The “Sunshine Genetics Act” – to provide whole genome sequencing at birth, free of charge and establish a national consortium of universities, children’s hospitals and private industry experts to coordinate and collaborate pediatric rare disease research
We encourage you to share their story
Andrew John Anderson was born on August 10, 2015, in an uneventful delivery after a routine pregnancy. The first several months of his life couldn’t have been better. Drew was always happy and healthy in every visible way. His two big sisters Kayleigh and Julie embraced their new roles, and their parents Adam and Brianne recall the warmest feelings of their family being complete. When he was about 6 months old, Brianne noticed something was a little off, Drew wasn’t developing quite as quickly as she hoped. His doctors weren’t alarmed citing the fact that boys typically develop a bit slower than girls and his sisters were both ahead of the averages. Brianne was never convinced and continued to monitor her baby boy closely, but no one would listen.
Around Drew’s first birthday he caught a nasty cold like all babies do but as he recovered from the illness, he began regressing developmentally losing some ability to hold his head up the way he did before the cold. That’s when the “Momma Bear” instincts came out in full force; Brianne’s cub was threatened. The Anderson’s traveled all over the country to see specialists searching for answers but finding none, only expensive medical bills and one misdiagnosis after the next. During the quest for a diagnosis Drew lost his ability to sit up on his own and seizures set in. It wasn’t uncommon for him to suffer from as many as 70 seizures in a single day. Adam and Brianne fought for comprehensive genetic testing and when Drew was about 15 months old they received the devastating news that their baby boy has infantile Tay-Sachs Disease, an ultra-rare genetic disorder affecting only a couple dozen children annually. A disease with no cure, one with no treatment and one doctors said would surely result in death in just a few short years.
This ruthless disease caused the rapid destruction of nerve cells in the brain & spinal cord and quickly lead to hearing loss, paralysis, loss of both fine motor skills and gross motor skills. Andrew’s quality of life continued to deteriorate as he completely lost his ability to sit up, move, and eat or drink on his own but he somehow always found a way to smile when he was with his sisters who helped care for him every day. Andrew passed away on December 22, 2019 when he was 4 just years old.
Sadly, a similar story is shared by over 30 million people in the US. Since Drew’s diagnosis his family made it their mission to ensure other families don’t have to live that same heartache and began advocating for research and cures to put an end to pediatric rare diseases and to increase access to genetic testing to end the diagnostic odyssey.
The Anderson’s formed the AJ Anderson Foundation in 2018 to help execute their mission and support other families affected by pediatric rare diseases.
August 10th ( Andrew’s Birthday) is Tay-Sachs Awareness Day in Florida and the Anderson’s work inspired by Andrew’s life lead to the creation of “The Florida Institute for Pediatric Rare Diseases” at Florida State University, “The Andrew John Anderson Pediatric Rare Disease Grant Program” at the Florida Department of Health, the “Andrew John Anderson Rapid Whole Genome Sequencing Program” to provide access to genetic testing in hospitals and “The Sunshine Genetics Act” to give parents access to whole genome sequencing at birth; increasing the list of conditions screened for as part of standard new born screening from 60 to as many as 600 diseases.
