On Tuesday, September 22, 2015, the United States Food and Drug Administration (FDA) held a public meeting on, “Huntington’s disease Patient – Focused Drug Development,” at their White Oak Campus in Silver Spring, Maryland.
Julie (Miles) Rosling (’69), who is disabled with Huntington’s disease, was selected by the FDA to be a member of a panel to present in person to members of the FDA Neurodegenerative division. She shared her thoughts about Huntington’s disease (HD) symptoms and daily impacts that matter most to her and other HD patients. Her message was the HD is not defined by the development of “chorea” only, and we must not ignore the debilitating cognitive and behavioral effects of the disease. She encouraged the panel to “fast track” approval time for experimental drug trials, hopefully leading to timely releases of effective drugs for HD.
Julie Rosling (’69), center, with Southern California Attendees at the FDA Headquarters for Neurodegenerative disease Panel
The meeting was very well attended by over 300 individuals from around the United States comprised of persons afflicted with HD, those “at risk” but not symptomatic, patient representatives, caregivers, HD advocates, Pharma, and other concerned individuals.
Julie is a strong advocate for creating parity for HD, that is equal to other Neurodegenerative diseases (Alzheimer’s, Parkinson’s and ALS), with Social Security Disability and Medicare systems to prevent delays in access to care and significant hardship on individuals with HD and their families.