Browsing Category

HD Research

HD Clinical Trials, HD Research

Stanford University Hosts 1st Annual HD Patient Care & Research Symposium

On Saturday, November 2nd, Stanford University will host a Huntington’s Disease Symposium.

This event was created for patients with Huntington’s disease and their families or others who would like to learn more about the disease.  This symposium will highlight current research and experimental therapies, measures that improve health including nutrition, exercise, and physical therapy strategies to improve psychiatric and cognitive challenges in Huntington’s disease and ways to support the patient and families.

The symposium will highlight experts from Stanford Center of Excellence.

To watch a video on HDSA Centers of Excellence, visit:  HDSACentersofExcellence

When:  November 2, 2019  8:30 am–1 pm

Where:  Michael’s at Shoreline, 2940 North Shoreline Blvd.  Mountain View, CA

Register:  https://www.eventbrite.com/e/stanford-huntington-disease-patient-care-symposium-tickets-71682752041?aff=ebdssbdestsearch

To watch a short video on HDSA Centers of Excellence, visit https://youtu.be/A3dGvRsnUS8


The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/

Author Therese Crutcher-Marin

We Can Never Lose HOPE………

My author website is https://www.theresecrutchermarin.com

 

HD Research, Helping Others

Lundbeck

After I returned from the 2019 Huntington’s Disease Society of America  Convention in Boston in late June, I began wondering how and what the partners (sponsors) of the event contribute to the Huntington’s disease community.

Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

On the back of the Convention Guide Book is a list of some of the partners. Today I’ll post about LUNDBECK.   lundbeck.com/us/about-us

Insight from Lundbeck’s Patient-Focused Approach to Business:

“Lundbeck offers financial support, and does it with a real understanding of what patient communities value and need: Patient groups are often strained for financial resources, which is why it’s not only important that we offer support generously, but in places where it can make the biggest impact. From many years of listening to patients, we have seen time and again how important it is for people to be able to connect with each other at patient group events and conventions. That’s why we introduced annual scholarships to help patients and their families attend the Huntington’s Disease Society of America (HDSA) Convention.”  

To read full article, visit:  lundbeck.com/us/our-commitment/community-involvement/moving-together-for-hd

Thank you to Lundbeck Pharmaceutical Company for offering scholarships to Huntington’s disease (HD) families so they are able attend the Annual HDSA Convention.  It’s so important for HD families to connect with the HD community so they do not feel alone.

We Can Never Lose HOPE…… 

         

Visit my Author Website at: https://www.theresecrutchermarin.com.  100% of the profits from the book, Watching Their Dance” is being gifted to the nonprofit HDSA.

HD Research

Nancy Wexler-The Gene Hunter

Dr. Nancy Wexler and myself at the 2018 HDSA Annual Convention in Los Angeles. I gave Alice & Nancy a copy of my book.

In 1979, Nancy Wexler, an American scientist, and her team began a collaboration with the affected families of Maracaibo. Due to breakthroughs in recombinant DNA research, the “Gene Hunter team”, as they were called, were able to initiate a study in which they created pedigrees, or family trees, of the vast network of HD patients in the region. Because the genealogy record was so thorough, the researchers were able to discover that all the residents of Lake Maracaibo had a common ancestor, Maria Concepcion Soto, who first arrived in the region sometime in the 19th century. She is considered the “founder” since approximately 20,000 descendants at risk for HD could be traced back to her. Bio on Dr. Nancy_Wexler     

With this wealth of data, the team was able to narrow down the location of the HD gene in 1983. This discovery was a huge scientific breakthrough, not only in the search for a cure, but also for understanding genetic inheritance.

Alice Wexler, Louise Vetter, Nancy Wexler
HDSA is receiving 100% of the books profits.

Left to right: Anna, her mother Nora Guthrie, Louise Vetter and Dr. Nancy Wexler
Anna Canoni is 3rd from the left & Dr. Nancy Wexler is on the far left
HD Research

Stanford University Huntington’s Disease Study

Kristina Cotter, a Ph.D/M.S. Candidate, Genetic Counseling is spearheading a Huntington’s disease project.  This is what Kristina shared with me.

“This study is Stanford IRB-approved and is an Huntington’s Disease Society of America (HDSA) sanctioned study. I designed it as a part of my master’s research project for Stanford’s genetic counseling program. I’ve been working with Leora Fox at Huntington’s Disease Society of America (HDSA) https://www.linkedin.com/in/leora-fox-28a59562/to help get the word out. It is advertised on the HDSA website at this time, and support group leaders should be sending out information soon.”

What-is-Huntington’s Disease

To participate in the survey, go to:

https://stanforduniversity.qualtrics.com/jfe/form/SV_6tC4lT283jDvqPr

This is how it begins:

To continue with the survey, click on the link above.

We Can Never Lose HOPE……….     

100% of the profits from Watching Their Dance, a nonfiction, inspirational love story while living in the shadow of Huntington’s, is being donated to the nonprofit, HDSA.

                       

Family, HD Research

Kate Miner’s Sister Jenne Coler-Dark

Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family.  Her mother, and two sisters tested positive.  Kate tested negative.  What-is-HD? 

Jenne Coler-Dark & her husband

Kate & her 2 sisters

Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment.  She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.

A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story

The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time  

To watch the film, please click on link below:

https://theaudienceawards.com/films/the-race-207129?fbclid=IwAR3qzCaijs6hOCgXkaK6VaHSG957KWs7HephWX9qOJK87U-J2m8JBBqqAMQ

  100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com

We Can Never Lose HOPE……………………….

 

 

 

 

 

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……

Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

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  https://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:  https://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:  https://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:  https://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook