The HCMC Center of Excellence works with the Minnesota Chapter of HDSA to offer support for HD families and caregivers. You can visit the HDSA website for the Minnesota Chapter by clicking here. There are monthly support group meetings facilitated by social worker Jessica Hancock. The groups are held in three different regions for the convenience of HD families: the Twin Cities, Northern Minnesota and Northwest Minnesota. In addition to giving HD families an encouraging environment, the support groups will occasionally have guests from the HD clinic to give presentations about health and medical topics. An annual Minnesota HD conference in September gives these groups an opportunity to meet with each other and hear from others who are closely involved with HD, like healthcare workers.
There are also collaborative efforts within the HD community to hold events to raise money for HD. Among these events are an annual Hoop-a-thon started by a local high school basketball player whose mother has HD. The Hoop-a-thon increases HD awareness and raises funds for HD medical research. Events such as the "Hits for Huntington's" Golf Classic and "Hunt for the Cure" Charity Paintball Big Game also raise money for HD organizations and research.
Several HD families have taken the initiative to reach out to the community and encourage people to learn more about HD. One family whose inspiring story has increased awareness about HD within their community is the Johnson family. The family cares for Mr. Johnson's childhood friend, Cory Daniels, who was diagnosed with juvenile HD at the age of eighteen, Cory was only given eight months to live when he was put in the care of the Johnsons. HOPES had the opportunity to speak with Mr. Johnson's wife, Heather, who worked as a registered nurse at a long-term care facility where Cory lived. Heather reconnected the childhood friends who lost touch after high school The Johnsons were aware that community care is more beneficial for patients than institutionalization, so they worked hard to obtain certification so Cory could come to their house to live. Cory has been with the Johnsons for over four years despite physicians' predictions that he would only live for another eight months. Through organizations like the HCMC center of Excellence and the Minnesota Chapter of HDSA as well as individuals like Cory and the Johnsons, the HD community in Minnesota hopes to continue providing support to one another and increase awareness about HD.
HOPES would like to thank the HDSA Center of Excellence at HCMC and Dr. Nance for allowing us to experience first-hand a clinic that provides quality care to HD patients. We would also like to extend our thanks to Research Coordinator Dawn Radtke for helping to arrange the visit and the Twin Cities Metro Area HD support group members for allowing HOPES to join their July meeting. To visit the website for the HCMC Center of Excellence click here.
- T. Wang, 4/12/2009
Last Modified: 05/22/2009
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