Huntington’s disease got the spotlight in early July on national news in a story featuring two families grappling with the diagnosis. The 15-minute segment features Kelsey Porter, wife of Scott Porter (Friday Night Lights) and Texas native Justin Furstenberg, who both carry the gene for HD. Upon learning of her mother’s diagnosis, Kelsey decided to get tested and ultimately to pursue parenthood through PGD-IVF, allowing her and Scott to have children free of HD. The couple has championed the yearly star-studded HDSA fundraiser Freeze HD. ABC News followed Justin on his testing journey with his wife at the HDSA Center of Excellence at UT Houston, where neurologist Dr. Erin Furr-Stimming, social worker Amber McCarthy, and other providers guided him through the process. It’s an excellent feature that highlights the financial, emotional, and physical hardships faced by HD families in America.
Gene Veritas on Genetic Testing & HDSA Resources
HD advocate “Gene Veritas” has an HD blog with a huge following. It often focuses on research and gives the inside scoop on major studies and players in the field. This week he talks about the very personal decisions around genetic testing, highlights the ABC News feature, and links to resources provided by HDSA around genetic testing. Importantly, he notes that “doctors and HD clinics are preparing for the likely boom in testing for the HD mutation that will occur if GENERATION HD1 or trials of other possible disease-modifying treatments are successful.” It’s important to increase awareness and education about HD research, testing, and care, for both families and professionals, so that we are prepared when experimental drugs become medicines.
HDBuzz on Histamine
Recent news articles have hyped up the connection between allergy medicines and Huntington’s disease, but the headlines are misleading. A group of researchers recently used an antihistamine to treat symptoms in HD mice, but this antihistamine is not the kind you would take for hay fever or pet allergies. However, there is a connection between histamine, the “allergy” messenger, and dopamine, the chemical messenger that goes awry in HD. The results of these experiments prove that our neurons mix and match the ways they send and receive chemical messages, which could inform the design of future therapies for HD and other brain diseases. But it doesn’t mean that taking Benadryl will have any effect on HD symptoms. Learn more in this week’s HDBuzz article on HD and histamines.