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.

Show All
DONATE NOW
Share our page on: Share to Facebook Share to Twitter

Programs

Description
The Huntington's Disease Society of America (HDSA) Centers of Excellence provide an elite multidisciplinary approach to Huntington's disease care and research. At these world-class facilities, 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.

The goal of the HDSA Center of Excellence (COE) program is to increase access to the best possible multidisciplinary clinical care and services for individuals affected by Huntington's disease (HD) and their families through a geographically diverse network of local and/or regional clinical centers. In addition to clinical and social services, the Centers will provide professional and lay education in the geographic areas they serve, are involved in HD clinical research and work with HDSA locally and nationally in its efforts to continually improve the lives of those affected by HD and their families.
Budget
$35,000
Program Successes
HDSA currently has 41 Centers of Excellence across the United States.
Description
Northern California Chapter provides a HD Support Group in Sacramento at UC Davis Medical Center on the 2nd Wednesday of each month from 7-8:30 p.m. The Chapter also support 6 other locations in Northern California.

Support groups can be led by a professional or by a peer (other HD family member or friend). Every support group leader is provided training by HDSA and assigned a mentor who can serve as a resource and support to the support group leader.

Support groups can offer vital emotional support along the continuum of HD, valuable advice about community-based resources as well as guidance from other support group members about many of HD's most challenging situations. Support groups can meet monthly or quarterly depending upon the number of participants and wishes of the group. Support groups can be established for everyone in the HD community - caregivers, those living with HD, those living at risk, youth at risk, etc.
Budget
$7,200
Program Successes
HDSA Northern California Chapter funds one support group at UC Davis Medical Center in Sacramento on the 2nd Wednesday each month from 7pm-8:30pm. Average attendance is 15-20 people.

Outside of the 4 counties for BDG, Northern California Chapter funds five additional support groups in Northern California: Chico, El Cerrito, Mill Valley, Palo Alto and Santa Cruz.

HDSA Northern California Chapter also offers Online Support Groups for those who cannot travel to a support meeting.
Website to enroll: www.supportgroupscentral.com/HDSA
Description
The annual HDSA Northern California Chapter Convention is co-sponsored by HDSA Center of Excellence at UC Davis Health and Kaiser Permanente hosted on the UC Davis Health campus in Sacramento. It's an all day event, free to the public, offers free parking and lunch is provided. Pre-registration is required. A range of topics are offered in breakout sessions. A few are: managing Huntington's disease, care giving, genetics, increasing mobility, future planning, being at risk, end of life options, genetic testing. Dr. Vicki Wheelock, Neurologist at UC Davis Health in Sacramento presents Huntington's Disease research updates. Social workers and genetic counselors are available from HDSA Centers of Excellence: UC SF Medical Center, UC Davis Health and Stanford Health Care Hospital.
Budget
$5,000
Program Successes
HDSA Northern California has organized a Chapter Convention in Sacramento CA for 22 years.
Description
A free educational seminar is offered twice a year and is a joint event between the Kaiser Permanente in Sacramento & UC Davis Huntington's Disease Centers of Excellence, in Sacramento and Roseville, providing information on Huntington's disease, research, resources presented by doctors, social workers and genetic counselors.
Budget
$1,000
Program Successes
For eight years, HDSA Northern California Chapter has offered two free Huntington Disease Education Day a year. One is held in Sacramento CA and the second in Roseville CA.
These events are joint events between the Kaiser Permanente & UC Davis Huntington's Disease Centers of Excellence.
Description
HDSA Social Workers are often the first voice that someone new to HD may hear. Social workers offer information, education and access to community based services within a specific region. They provide in-services to long term care facilities where persons with HD reside, assist with the disability application process, facilitate support groups, identify and develop relationships with the local medical community, maintain the local helpline as well as develop resources for HD families and healthcare professionals within their area.


Budget
$1,000
Program Successes
Lisa Kjer-Mooney, LCSW, has been the Northern California Chapter social worker for eight years at UC Davis Medical Center in Sacramento. She assists Huntington's disease families, who live in Northern California, in finding resources, Centers of Excellence, submitting disability claims, and other issues when Huntington's disease is in a family.