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.”

Everybody is welcome
 

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 Southern Caregiver Resource Center (SCRC), 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 from the SCRC and COE. Speakers such as healthcare professionals, legal experts, and housing and placement specialists give talks to the group on resources, coping mechanisms, and other topics.

 

Activities start at 6:00 pm 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.

Your involvement is important
 

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.

 

The support group meets at the Scripps Mende Well Being Center in the University Towne Center, 4305 La Jolla Village Drive, Suite L-5. For further information, call the SCRC at 800-827-1008 or Jody Goldstein of the COE at 858-622-5854.

 

The SCRC is a private, nonprofit organization that offers support and services to family caregivers. For more information, contact Andrea Cangiano, LCSW, at 800-827-1008. The SCRC website is www.scrc.signonsandiego.com.

 

The COE staff is dedicated to serving the needs of those affected by HD and providing quality HD care and services, education, and research opportunities. For more information, contact Jody Goldstein at 858-622-5854 or via e-mail by clicking here.

See articles below for the current annual support group calendar and other support group news and information.

 

(This article was written by Andrea Cangiano, Pam Foye-Needle, Jody Goldstein and Sandy Jerkins.)