Volunteer

Help with Team Hope Walk-a-thons

The Northwest Chapter of the HDSA will be holding its 3rd Annual Team Hope  Walk-a-thon this late summer/early fall in Washington state in addition to it's 1st Portland area walk. We could use your help! We'll need help with registration, set-up, clean-up and other miscellaneous tasks. If you would like to help, please contact the event coordinator:

Roxanne Harris
phone: 206.434.9173
email: info@nwhdsa.org

 

Participate in Huntington's Disease Research

Currently, three Northwest Huntington's Disease research studies are looking for participants. Your participation in these types of studies is critical for finding effective ways to slow down or cure Huntington's Disease. Please consider participating in one or more of the below studies.

PHAROS (Prospective HD at Risk Observational Study) - An observational study to advance knowledge about the experience of being at risk for HD, and to lay the groundwork for future studies of treatments to delay onset. The requirements for volunteers are: 26 - 55 year of age, at risk for HD (an affected parent) and never had gene testing. Volunteers are evaluated by two neurologists and a nurse practitioner every nine months. The University of Washington is enrolling new subjects.

PREDICT - HD (Neurologic Predictors of HD) - An observational study of the behavioral and MRI predictors of HD onset. This study differs from PHAROS in having more detailed testing of concentration and memory in addition to a neurologic examination and a MRI of the brain. The requirements for volunteers are: 26 years of age and older, tested for the HD gene (both negative and positive), never diagnosed with onset of HD by a physician, and able to bring a companion along to each visit.

Volunteers are evaluated by a movement disorder specialist and a nurse practitioner every year. The University of Washington is enrolling new subjects. Subjects are compensated for visits.

Spinal Fluid Biomarkers in HD - A study of spinal fluid in persons affected with early symptoms of HD and unaffected persons as controls, to determine whether there are changes in spinal fluid that will be useful in understanding the biologic events occurring in the brains of persons with HD. Biomarkers might be useful in identifying the earliest stages of HD, following the progression of the disease, or in monitoring the effects of treatments. The University of Washington is enrolling new subjects. Subjects are compensated for participation.

If you have questions or are interested in being a volunteer for any of the above studies, contact Hillary Lipe, ARNP, Study Coordinator, at (800)329-8387 X61825 or (206)277-1825.

Other Ways to Help

• Provide transportation to medical appointments for those with HD
• Provide light housekeeping/childcare for HD families
• Donate time to nursing homes/care facilities
• Contact info@nwhdsa.org for more ways to help