Double Digit Donations!

Galactosemia is a rare condition that is diagnosed in approximately 80 newborns in the U.S. each year. In total, it affects 3,000 people in the U.S.

Joey was diagnosed at three days old with Galactosemia via New York State’s Newborn Screening Test.  During infancy Joey was very sick and underwent treatments to remove the galactose build up from his body to help his failing organs thrive.  Upon diagnosis, Joey responded quickly to a galactose-free diet and has been growing and thriving ever since.  Joey is a very happy boy with a pure and loving heart.  His perseverance shines through as he works hard daily in school and through his therapy services for the diseases side effects.

Galactosemia means "too much galactose in the blood."  Galactose builds up in the blood because Joey's body is missing an enzyme (GALT) to break it down.  Joey’s body (all of our bodies) produces galactose, which also does harm to him.

Joey's Double Digit Donations fundraiser is hosted in honor of his 10th Birthday (2/8) and Rare Disease Day (2/28)!  Your donations will help support research and funding for Joey and others affected with Galactosemia. 

In 2020, Joey participated in the Applied Therapeutics pediatric clinical trial for a drug study to help reduce the amount of galactose within his body.  The trial was put on hold due to COVID, but will be kicking off again this month and will continue through 2021.  Joey has loved the experience of being a part of a ground breaking trial that will impact Galactosemics!  

Read more about Joey's story here:
https://www.rarediseaseday.org/stories/7004

Visit www.galactosemia.com to learn more about Galactosemia.

Thank you!