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HD Research

HD Research

Ionis HTTRx Drug for Huntington’s Disease Narration

(If my video doesn’t appear, please go to  https://youtu.be/P8exuKRfuPE  to watch my discussion on Ionis HTTRx)

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.             100% of the proceeds are being donated to Huntington’s disease organizations around the world.  

We can never lose Hope……

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HD Research

Good News for the Huntington’s Disease Community

On December 11, 2017, the Huntington’ disease community received wonderful news; Ionis HTTrx drug moves closer to a therapy for Huntington’s disease. To read more about the announcement click here:  Breaking News: 

The terrific news also brought a lot of questions from the HD community.  So, on December 18, 2017, a Q&A coordinated by the UK HD Association, Dr. Ed Wild answered questions on the recently-announced trial.  Edited by Dr. Jeff Carroll.

 Click on this link to read Dr. Wild’s answers.  

Dr. Ed Wild, MRCP, PhD, a Principal Investigator at UCL Institute of Neurology and a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square, London.

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.

100% of the proceeds from Therese’s book sold in the U.S. is being donated to HDSA.

HD Research

Sign up for Enroll HD-It’s Important

One way that Enroll-HD is unique is that it is  designed to be a public resource shared by the whole  HD research community.  Enroll-HD is a global multi-center observational study of Huntington’s disease (HD). It tracks people over the long term who either have HD or who are at risk, to monitor how the disease appears and changes over time in different people.   https://www.enroll-hd.org/welcome/  

Most studies are restricted,  so that only the researchers who collect the information can get access to it to learn about the disease. Enroll-HD uses high standards to protect the privacy  of participants, so that anyone with a valid research  project can get access to data with all  potentially identifying information removed.  https://www.enroll-hd.org/  

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

HD Research

Enroll in a Clinical Trial for Huntington’s Disease

 YOUR PARTICIPATION IS IMPERATIVE!!!!       

Through clinical trials, researchers are testing new ways to detect, treat and prevent Huntington’s disease. Recruiting clinical trial participants in a timely manner, as well as maintaining their participation in trials, is the greatest obstacle to developing the next HD treatment.

The entire HD community needs your help. Without participation, finding a cure is virtually impossible. Until a cure exists, the best possible way to fight back against HD is to participate in the research process. People with HD, caregivers and healthy volunteers are all needed today to participate in all aspects of HD and research.

When you join a clinical trial, you have an opportunity to participate in vital research that could change the course of this disease and improve the lives of all those it affects. Your participation in clinical trials provides hope for today and promise for a future free of HD.

If you are thinking about joining a clinical trial, talk with your family and doctor about what is right for you. Share the HD Trial Finder website or HD Trial Finder brochure with them so they understand how to use the service and the types of HD-related clinical trials being conducted across the country.  http://hdsa.org/hd-research/enroll-in-a-clinical-trial/

In the U.S., 100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to HDSA. Outside the U.S., the proceeds are donated to a Huntington’s organization in the country where the book is purchased.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

To listen to HDSA CEO Louise Vetter talk about the importance of enrolling, please see:   https://youtu.be/Oc2POI_VUBU  
HD Research

Huntington’s Disease Buzz-HDBUZZ

HDBuzz, an online site was founded by two incredible Huntington’s Disease scientists, Dr. Ed Wild and Dr. Jeff Carroll. This team is dedicated to bringing accurate HD laboratory and clinical research news to the Huntington’s community around the world in easy to understand terminology.  HDBuzz

To hear these Dr. Wild and Dr. Carroll’s  discussion at the 2017 HDSA National Convention in Schaumburg, IL, last June, click on link.It’s the 6th video on the link. HDSA2017NationalConvention

 

Dr. Carroll is positive for the HD mutated gene and The Seattle Times wrote his story in May 2017.  The article title was, “Huntington’s disease is going to kill him, but this Bellingham scientist is tackling it head-on”. Here is the link to read his story.

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook