Needs
Financial Assistance with Cost of Medications Program:
A new medication, Austedo by Teva pharmaceutical, to control HD chorea, or involuntary movements in HD patients, was authorized by the FDA in April 2017. The cost for Austedo, the newest drug is expensive and unaffordable by many HD families. HD families become financially challenged during the progression of the disease, over 10-20 years, because the HD patient becomes disabled and there is a loss of income. Then in the later stages of HD, the patient cannot be left alone, and family members become the caregiver and lose another income. Or the patient has to be placed in a skilled nursing home and family is challenged with the cost of the facility. Without the medication, the patients quality of life is impacted tremendously and they become isolated because taking them out becomes impossible.
Volunteers:
Our Chapter utilize volunteers in a variety of roles related to programs, fundraising, marketing, outreach, board service, social media, local Chapter Convention, and education days, etc.
Outreach Program:
NorCal Chapter needs funds to conduct a organized outreach program to heighten awareness of HD. Many neurologists, nurses, nursing home employees are unfamiliar with the disease process because HD is a rare brain disorder.
The needs are:
- Print Chapter "Nucleus" newsletter
- Office supplies; i.e. envelopes, stamps, paper, etc.
- Purchase HD brochures
Visiting Huntington's Disease Specialist Program:
The professional will visit HD families in their home, in the four counties, and evaluate the needs of the patient and family and offers solutions.
Examples:
- Help the family through the disability process to replace income lost
- Advise on how to make house safer (falls a very common in HD patients)
- Advise on preparation of food so patient doesn't aspirate (swallowing muscles are compromised with HD)
Continue support for group leaders. Support group leaders are professionals hired by the HDSA Northern CA Chapter to meet monthly with HD patients and those at risk of HD. Support groups help with understanding how to help HD patients and dealing with risk of HD.
Event Planner (contracted):
NorCal Chapter would like to increase the number of Education Days, offered to the HD community within the four counties.