Eradicating Huntington’s Disease, One Healthy Baby at a Time
Huntington's Disease (HD) is a genetic disorder that affects the brain, causing cognitive decline and movement disorders. There is no cure for HD, and for those who have inherited the gene, the disease can feel like a ticking time bomb, waiting to manifest itself. For MLB veteran Joe Smith, the disease has already taken a heavy toll on his family. Joe lost his mother and grandmother to HD, and he himself has a 50% chance of inheriting the gene.
For Joe and his wife TNT sports reporter Allie LaForce, the decision to have children was not an easy one. They knew that if Joe had inherited the HD gene, there was a 50% chance that their children would have it too. But they also knew that there was a way to prevent their children from inheriting the gene: Pre-implantation Genetic Testing (PGT).
PGT is a process that screens embryos for HD before they are implanted using in-vitro fertilization (IVF). This allows couples to prevent their children from inheriting and passing on Huntington’s disease. However, PGT and IVF are expensive procedures, up to $40,000, and not accessible to all families.
Healthy, HD-Free Babies Thanks to Support from HelpCureHD
Joe and Allie recognized the financial and emotional strain that these procedures can have on families. They decided to start HelpCureHD, an organization dedicated to providing support and resources for HD families while other organizations work towards finding a cure. Through HelpCureHD, they hope to make PGT and IVF more accessible to families affected by HD, so that they can have the opportunity to prevent the disease from being passed down to future generations.
For Joe, HD is a disease that has impacted his life in a profound way, and he often explains the similarities between HD and other movement disorders like ALS, Parkinson's, dementia, and Alzheimers. “Once you live with someone who has it, or someone in your family has it, you understand how devastating this really is,” he said. “You watch them deteriorate to a point where they’re just not them anymore.”
The impact of HD is not just limited to those who have the disease. For their loved ones, it can be a heartbreaking and emotionally taxing experience. Allie knows this all too well. “Not a single family should be held back from preventing their child from having Huntington’s Disease or even going through fertility treatments because money stands in the way,” she said.
For Joe and Allie, the mission of HelpCureHD is personal. They want to help families affected by HD find hope and support in the face of this devastating disease. They want to offer a way to prevent the disease from being passed down to future generations, so that other families don't have to go through the same pain and suffering that they have.
Moments from the Driving for Hope Classic
The Dormie Network Foundation is proud to support HelpCureHD’s mission with in-kind donations of a stay-and-play package and a one-year membership, and a foursome for $20,000 that played in the "Driving for Hope" Classic golf tournament, held on February 6, 2023. In total, Dormie Network in-kind products and donations raised $63,000 for the cause.
With PGT and IVF, HD can be wiped out forever, and HelpCureHD is helping families eradicate the disease from their own family lines one pregnancy at a time. Learn more at helpcurehd.org.