If you are not currently on our support group mailing list and would like to be, please send a note to
Mindy Schroeder mindy.schroeder@gmail.com
and ask to be added
Southern California Area Support Groups
In addition to our local meetings, we are partnering with other HDSA Chapters to offer support groups to a broader community.
Who:
We invite all persons with HD Symtpoms to join this support group which will include participants across Southern California. Come join us to connect with other HD persons and discuss triumphs, challenges, ask questions, and get SUPPORT from others that know what having HD is like!
If you live outside California, but receive HD care in CA, you are welcome to attend.
When:
Time:
Noon to 1:30PM
Where:
Zoom
Click her to register.
You only need to register once. Once you registered you main join as often as is comoftable for you.
When:
Third Sunday of each month
Who:
We invite all persons who are caregivers to individuals with HD to join this support group which will include participants across Southern California. Come join us to connect with other Caregivers and learn from one another's experiences.
To register email sreynolds@hdsa.org
This support group is open to any persons (18 & over), living in CA that are grieving the loss of an HD loved one. Often it is hard for others to understand or relate to the grief and loss our HD families experience and our hope is this group can provide a safe platform to openly discuss all aspects of grief/loss associated with the death of an HD loved one. Death leaves a heartache no one can heal; love leaves a memory no one can steal. ~Author Unknown For more information, please contact any of the facilitators above.
When:
Noon to 1:30PM
Where:
To register click here
Contact Doug Schulte for questions.
(858) 245-8571
dschulte91@outlook.com
or
sandiego@hdsavolunteer.org
Susan Reynolds, MSW, LICSW
Facilitates the HD Caregivers or Support Person Group and California HD Bereavement Video Support Group
Susan took over the HD Caregivers or Support Person Group in April of 2022. Her clinical background includes working in skilled nursing facilities, home health and hospice social work, oversight of a hospice volunteer program and facilitating continuing education events at UWMC and presenting continuing education for WA state and at national HDSA conventions. She brings expertise in comprehensive assessment of emotional and support needs, community resource brokering, networking with social workers and other interdisciplinary professionals locally and nationally, grief and loss counseling and support, long term care planning and preparing advance directives. In addition, she has experience with State and Federal programs for disability and health insurance, as well as in home care and placement for care. Susan loves to develop strong relationships with families and community professionals in order to ensure that she stay up to date on counseling, housing, nutrition, medical and other necessary resources for individuals and families/caregivers affected by HD.
Sandy Jerkins-Grofcsik, BS
Facilitates the HD Positive Support Group
Sandra Jerkins, B.S. graduated from University of California, San Diego with a Bachelor of Science in psychology. She is currently a psychometrist at UCSD Shiley-Marcos Alzheimer’s Disease Research Center working on finding treatment for Alzheimer’s and other related neurodegenerative diseases. She began her career working directly with Huntington’s Disease research and has felt a kinship with the HD community ever since. Her favorite part of being a facilitator is interacting with HD families on a regular basis. Being part of the HD community is something she is proud of and her greatest hope is for a treatment and cure. She is a San Diego native who loves her family and community. In her free time, she enjoys hiking, walking her dog, and spending time outdoors.
Do you have Huntington’s disease in your family? Do you provide care for someone with HD? Do you have symptoms of HD or are you at risk? Would you like to meet other people who have been affected by HD? Are you interested in learning strategies to help you deal with HD?
People reach out for support for a number of reasons. Support can range from simply lending a helping hand to advising on financial issues and stress management. A support group is also a place for people to share concerns and obtain emotional support. Attending a support group may be a difficult decision, but also one that may open many doors and offer connections.
“I started attending the San Diego HD support group about ten years ago as someone at risk for HD,” says Pam Foye-Needle. “Spending time with others who are ‘in my shoes’ always seems to make us feel like family. The resources available helped me to make an informed decision regarding genetic testing for HD, as well as connecting me with HD studies for those at risk. I am currently on the HDSA San Diego board as its liaison to the support group. It really is hard to convey in words how much the support group has meant to me over the years.”
The group includes people affected by HD, individuals at risk, caregivers, and family members and others whose lives are affected by HD. It meets the fourth Monday of the month (except in December). It is sponsored by the HDSA Center of Excellence for Research and Family Services at the University of California, San Diego (COE) and HDSA-San Diego. There is no charge for participants.
The group is subdivided into sections for caregivers, at risk and the affected. Each group is led by facilitators. Speakers such as healthcare professionals, legal experts, and housing and placement specialists give talks to the group on resources, coping mechanisms, and other topics.
For in person meetings: Activities start at 6:00 p.m. with food and beverages, followed by announcements, speakers, and the support sections. Meetings without speakers end at 7:30 p.m., and those with speakers finish at 8 p.m.
What makes an effective support group?
Involvement from the HD community, people spreading the word about the group, willingness to participate in a group setting and share experiences, and cooperation and collaboration among members
What are some benefits of a support group?
Meeting others familiar with the effects of HD, caregiving strategies, self-help strategies, knowledge about reliable community care and resources.