TNT reporter Allie LaForce and husband Joe Smith host second annual HelpCureHD luncheon

Who, What, Why

Recently, Houston Astro Joe Smith and wife, TNT reporter, Allie LaForce gathered with their closest friends and family in the Houston area to ask for support to raise awareness and funds for a project near to their hearts, HelpCureHD. Global Genes had the opportunity to join in the event, sharing a table with fellow Houston area rare disease patients, advocates and medical professionals.

A heartbreaking and debilitating disease, Huntington disease (HD) shows little mercy to its victims or their families. And then, after witnessing some of the most heart-wrenching moments, another loved one may fall to the same fate. Inspired by their own experiences, advocates Allie LaForce and Joe Smith have set out to cure HD through their foundation, HelpCureHD.

Smith witnessed the hardships of the disease as they affected his grandmother, and now his mother, Lee Smith is also fighting the disease. Since then, Joe and Allie have committed to finding ways to support their community through preimplantation genetic diagnosis in vitro fertilization (PGD-IVF), something they are all too familiar with themselves as they look to start a family. Funds raised through their foundation help close the financial gap that families face when trying to conceive a child that is HD-free. 

The luncheon brought more than 200 close friends, advocates, medical experts, families, and teammates to learn more about the foundation and raise money for other families affected by the disease. Regardless of the connection to the foundation, one thing was certain, guests were inspired to support an organization that was born out of love, compassion and the hopefulness of finding a cure.

The Faces

Recently, it seems that rare disease, drug therapies, clinical trials and research are finally getting the media headlines they have needed for quite some time. But, it’s important to remember the faces and the names of the people who have inspired movements, established foundations and sparked research and medical advancements. That’s what we witnessed here. A family’s willingness to share their struggles and the reality of a debilitating disease. And yet, with all the work, support, fundraising and research, there is a reality where this does not change their own family’s fate. However, a room filled with somber thoughts was met with an overwhelming feeling of hope and support from those willing to stay in the fight.

The Connections

Along with Houston area Huntington disease patients and advocates, Global Genes was joined by RARE Foundation Alliance member, Bridge the Gap – Syngap ERF.  Allie LaForce will share more of her story at the upcoming RARE Patient Advocacy Summit where she’ll join Allison Goetsch of Lurie Children’s Hospital of Chicago, and Taylor Kane of Remember the Girls to discuss family planning while rare. Friday evening, Allie will also serve as the Master of Ceremonies at the RARE Champion of Hope Celebration.