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Huntington’s Disease Online Support Groups

In the past few years, Huntington’s Disease of Society of America (HDSA) has been offering online support groups for those struggling with Huntington’s disease (HD) or living at risk.  I think it’s a great service to offer because not everyone in the U.S. has access to a  support group close to their home.  HD is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE. http://www.hdsa.org

To participate in the group, please sign up.  Here is the link to do so:  https://www.supportgroupscentral.com/groups_

Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  In December, I donated $9,015.00 to HDSA which was the profit from 2017 book sales.

 

Resources

UC Davis Huntington’s Disease Clinic

The UC Davis Huntington’s Disease Clinic is recognized as a Huntington’s Disease Society of America (HDSA) Center of Excellence for their expertise in clinical care for Huntington’s disease patients. The Huntington’s Disease Clinic is one of the largest in the country and the only Level 1 Center of Excellence in Northern California. It is led by UC Davis faculty members in the Department of Neurology. In addition to clinical care, patients also have access to emerging new treatments through clinical trials.  Please click on  https://www.ucdmc.ucdavis.edu/huntingtons/     to see the full website.

The UCD Center of Excellence (COE) offers anonymous testing which most COE’s don’t have available to their patients.  John was tested in January 2017 and we tested anonymously; John was just a number and the bills were addressed to the number.  It reassured us that if his test was positive, it was not, that our kids would not be linked to his file.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

Therese and John donated $9,015.00 to HDSA in December which was the profit from books sold in the U.S. since she published in April 2017.

 

Resources

The Huntington’s Study Group

hsgBanners_350x175-08The Huntington Study Group (HSG) is a proven world leader in facilitating high-quality clinical research trials and studies in Huntington disease (HD). Here is a great website for current information on HD.           http://huntingtonstudygroup.org/about/

HSGroups have the first and largest HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists and HD experts at over 100 HSG Credentialed Research Sites http://huntingtonstudygroup.org/find-an-hsg-research-site/hsg-credentialed-research-sites/  across the globe dedicated to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by HD. In addition to this vast clinical network we collaborate with industry, government and foundation sponsors, CROs and HD advocacy and community partners.

Care Education Videos are also on this site.   http://huntingtonstudygroup.org/care-education-videos/

Have a good day!   Therese