Huntington's Disease Society of America Northern California Chapter

To improve the lives of everyone affected by Huntington's disease; a fatal, genetic, incurable brain disorder that progressively destroys the nerve cells in the brain.

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Address: P.O. Box 161238
Sacramento, CA 95816-1238
County or Parish: Sacramento
Executive Director: Louise Vetter
Contact Email:
Primary Phone: 916-768-7200
Fax: 916-652-7685
As the leaders in the fight against Huntington's disease, The Huntington's Disease Society of America (HDSA) Northern California Chapter has been serving their mission to improve the lives of everyone affected by Huntington's disease (HD) since the 1980's. From community services and education to advocacy and research, HDSA is the world's leader in providing help for today and hope for tomorrow for people with Huntington's disease and their families with the goal of achieving their vision of a world free of Huntington's disease.

Famous songwriter Woody Guthrie died of HD complications in 1967 and his wife Marjorie placed a small ad in a New York City newspaper and slowly gathered a determined handful of volunteers and HD families from across the United States. From that first moment, when Marjorie Guthrie reached out to other HD families, a worldwide movement began that would change the lives of those living with HD and bring hope to families. She and five other volunteers succeeded in forming the Committee to Combat Huntington's Disease (CCHD), which was incorporated in the state of New York on September 18, 1967, as a nonprofit voluntary health agency. After Marjorie's death in 1983, the CCHD evolved into HDSA.

The Northern California Chapter supports a HDSA Centers of Excellence in Sacramento that provides to HD families an elite multidisciplinary approach to Huntington's disease care, testing, and research. At this world-class facility, patients benefit from expert neurologists, psychiatrists, therapists, counselors, and other professionals who have deep experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Our Chapter provides information, referrals, support group meetings, free education days, outreach to heighten awareness, a free one day local HDSA convention on HD research updates, eight workshops pertinent to people living with Huntington's disease and those living at-risk. Today, there are approximately 30,000 symptomatic American's and more than 200,000 at risk of inheriting the disease and no cure or therapy exits. There are medications to help with symptom control.
With HDSA, no one fights alone. HDSA has developed a nationwide network that includes Chapters, Affiliates, HDSA Centers of Excellence, Support Groups and Social Workers that are ready to assist families with resources in their area. HDSA Northern California Chapter is one of 54 volunteer Chapters and Affiliates in the U.S. supporting Huntington's disease services for families in Sacramento, Yolo, Placer and El Dorado counties. Every dollar we are able to direct to helping our families comes from donors like you. Your generosity makes real progress possible and propels us toward our goal of a world without Huntington's disease. Your donation will help us continue our work to bring life-changing treatments and therapies to thousands of juveniles and adults struggling with HD. Our top needs: 1. Funding: Program - 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. 2. Volunteers - 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. 3. Funding: Program - 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 4. Funding: Program - 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. 5. Funding: Unrestricted - Event Planner (contracted): NorCal Chapter would like to increase the number of Education Days, offered to the HD community within the four counties.
"Huntington's disease families are always aware of the "clock on the wall," and the "calendar." Each passing day creates greater risk, more complicated symptoms and the onset of the disease. For HDSA, we're constantly working against that clock and racing to bring science forward as quickly as we can to make sure that every family in the United States has access to a truly expert HD professional. For us right now, we're continuing to push the expansion of our Centers of Excellence program, and to get the HD Parity Act passed on Capitol Hill, which continues its charge forward, and to bring disease-modifying treatments forward. We won't stop until every family is able to stop the course of this disease."

Louise Vetter
President and CEO
Huntington's Disease Society of America
-- Louise Vetter, President and CEO