About Author

More About Crossroads

Crossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck

In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever.  Living with an unknown gene status for Huntington’s disease (HD) petrified me and I questioned whether I had the strength and a love strong enough to live a life of uncertainty.  what-is-huntingtons-disease

I go stuck stuck, I felt tied up, for seven (7) months, difficult months with a broken heart.  I felt guilty turning away from John, because he MIGHT have Huntington’s disease.  But I was scared.


In the end, I took a leap of faith to be with John and even though his three (3) sisters died from Huntington’s disease, I have never regretted my decision.

We Can Never Lose HOPE….

Therese’s author website: https://www.theresecrutchermarin.com

HDSA 2019 Convention

About Author

A Crossroad at Age 22

The nonfiction book I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, begins with the following words:

Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next.  Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make.  Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment.  That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Never before had I been confronted with such a huge crossroad that caused a dramatic pause. That pause, lasting for seven heartbreaking, confusing months, was whether to continue my relationship with the love of my life, John Marin, who had a 50/50 chance of inheriting Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder with NO CURE and it affects children and adults.  To read more about HD, click here

Having grown up in the Midwest, with 1950’s over protective parents who’s only expectation of their four (4) daughters was to marry and have kids, I lacked life experiences with death and genetic diseases.

Watching the Dance Huntingtons DiseaseBy purchasing my book, you will be helping in the fight against HD because 100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  It can be found on many book websites like amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208:

or on my Author Website:  https://theresecrutchermarin.com/purchase-book/

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE…………..

The Woody Guthrie Family

The Legacy of Woody Guthrie

During the summer of 2017, John and I trekked across the Midwest in our RV for three months, to promote my just published book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 

I had spent a lot of time searching for Huntington’s Disease Society of America (HDSA) Team Hope Walks and HD support groups that I could attend on the trip.  Once that was complete, we mapped out the trip.

Two other places that I wanted to visit, was the Woody Guthrie Center in Tulsa Oklahoma, where I would hold a book discussion.  https://woodyguthriecenter.org/    (Woody died from Huntington’s Disease (HD) complications.) https://en.m.wikipedia.org/wiki/Woody_Guthrie

The second place was Woody’s hometown of Okemah Oklahoma, where the Woody Guthrie Folk Festival has been held for the past 21 years.  John and I spent four (4) days at WoodyFest and had a really great time.   https://www.woodyfest.com/

Anna Canoni, Woody’s granddaughter, attended the 2019 HDSA Convention in Boston, she comes every year, and she congratulated me on the Woody Guthrie Advocacy Award I was presented with at the Gala.

Woody Guthrie Publications is administered by Woody Guthrie’s daughter Nora Guthrie and his granddaughter, Anna Canoni. https://www.woodyguthrie.org/contact.htm

Her grandfather, Woody, and grandmother, Marjorie, are my hero’s and I’m proud to be an HD Advocate, helping to make a difference and hoping I will see a therapy/cure in my lifetime.

We Can Never Lose HOPE………………



CHDI Works Strictly On Huntington’s Disease

Author Therese Crutcher-Marin

Huntington’s disease folks may not know about the following organization.  They are another organization helping us move forward to find a therapy/cure.

Please watch the video from CHDI Foundation, Inc.  CHDI is a United States based non-profit biomedical foundation that aims to “rapidly discover and develop drugs that delay or slow the progression of Huntington’s disease“,[4] a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline.  https://chdifoundation.org/

Simon Noble, PhD, CHDI Director, Scientific Communications, states, “CHDI want to have as many families as possible watch it as our reason for producing these videos is to offer families hope.”

We Can Never Lose HOPE….




Blog Series on HOPE

I’m kicking off a series on HOPE with a positive video from Post Card from Palm Springs, “Highlights of the 2019 CHDI Therapeutics Conference” with Charles Sabine, Huntington’s Disease Advocate.  Watch the video here:  

At this time, the Huntington’s disease community is filled with HOPE because there are many promising clinical trials being conducted around the world. i.e. Roche RG6042 https://clinicaltrials.gov/ct2/show/NCT03842969, Uniqure AMT-130 https://en.hdbuzz.net/274, Vaccinex vaccinex-signal-trial/, Wave Life Science wave-life-sciences-provides-timing-update-precision-hd-clinical.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://www.hdsa.org       

Mai-Lise Nguyen, Roche Patient Partnership Director says the trial will answer these question, “Does the lowering of mutant huntingtin translate into actual clinical benefit?  Is it a meaningful benefit for patients and their family?”

Approximately 660 people are enrolled in the clinical trial in 15 countries around the world and we all await the results from the trial.

We Can Never Lose HOPE……….. 





HD Clinical Trials

The FDA Orphan Drug Act/Huntington’s Disease

In 1983, Orphan Drug Act (ODA) was set up to encourage increased development of drugs for rare diseases. It was amended in 1984 to define rare diseases as those that affect less than 200,000 people in the United States, but it also included drugs for diseases affecting more than 200,000 people as long as there was no commercial viability—that is, that the cost of development and making available in the United States a drug for the disease would exceed revenue from the US sales. Huntington’s disease fits that criteria.  Overview-of-huntingtons-disease/

Wave Life Sciences has seen the FDA grant it an orphan drug designation for its lead candidate WVE-120101.  The experimental drug, which targets rs362307–a single nucleotide polymorphism that is associated with the disease-causing mutation in the huntingtin gene.

The orphan status gives it 7 years of exclusivity in the U.S., and other boosts, including tax credits related to clinical trial expenses, an exemption from the FDA user fee, and FDA assistance in clinical trial design.

To read more about the Orphan Drug Act, visit:  https://www.ajmc-the-orphan-drug-act

We Can Never Lose HOPE………………

The author website for the nonfiction book I published is https://www.theresecrutchermarin.com

Watching Their Dance on many book websites like Amazon https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

HD Clinical Trials

SIGNAL Clinical Trial for Huntington’s Disease

Another Sponsor at the Huntington’s Disease Society of America in Boston last June was Vaccinex, Inc

Vaccinex and the Huntington Study Group (HSG) launched a trial for people with the gene mutation that causes HD who are either early in the progression of the disease or are not yet diagnosed with the disease.

SIGNAL, a Phase 2, multi-center, randomized, double-blind, placebo controlled study in subjects with early manifest and late prodromal Huntington’s disease (HD) to assess the safety, tolerability, pharmacokinetics, and efficacy of VX15/2503 (pepinemab). Pepinemab a monoclonal antibody that is a potential treatment for Huntington’s disease (HD).  What-is-hd/overview-of-huntingtons-disease/

On January 16, 2019, Vaccinex, Inc. announced the enrollment was complete and includes two cohorts with a total of 265 Huntington’s Disease subjects – 179 in group 1 (B1) who have early manifest disease and 86 in group 2 (B2) who are late prodromal.  All subjects are randomized to receive monthly infusions of either VX15/2503 (pepinemab) or placebo for 18 months in double-blind fashion without crossover.

To read more about the SIGNAL trial, visit http://ir.vaccinex.com/news-releases/news-release-details/vaccinex-inc-announces-completion-enrollment-its-signal

To read FAQ regarding about the trial visit: https://huntingtonstudygroup.org/signal-faq/

Please visit my Author Website to read my blogs about Huntington’s disease and my personal experience  https://www.theresecrutchermarin.com

We Can Never Lose HOPE……………….

Author Therese Crutcher-Marin

HD Advocates, Love

Huntington’s Disease Advocate Marjorie Guthrie


Phyllis Marin

The following is a letter I received from Marjorie, Woody Guthrie’s wife in 1978 when my then fiance, John Marin and his three (3) sisters discovered the family secret; their mother, Phyllis Iva Cahoon Marin, had Huntington’s disease (HD). What is HD?

Marjorie and five other volunteers succeeded in forming the Committee to Combat Huntington’ s Disease(CCHD), which was incorporated in the state of New York on September 18, 1967, as a nonprofit voluntary health agency. To read about Marjorie, go to https://hdsa.org/about-hdsa/hdsa-history/  The CCHD, later evolved into the nonprofit, HDSA, after her death in 1983. http://www.hdsa.org    


Dear Therese, 

I wanted to answer your letter to us personally because I really do appreciate your thoughts and the fact that you are not deserting your young man and are looking for ways to HELP!  That is a wonderful attitude….and I am sending you a packet of information about CCHD and the work we are doing.

I hope that after you read all this you might be “inspired” to JOIN WITH US….and perhaps in time….you might event help us build a chapter in your area.  The closest to you is in San Francisco.  But…for now…read…and learn what is going on and when you can…get involved. 

We need FRIENDS!  No one asks the cancer patients to go out and help…and we must realize that most of the HD families who are burdened with the problems of HD can not do all that must be done!  We look for friends, relatives, people who really care and you just might  be one of those!   I will be anxious to hear from you…..Until then….


Signature of Marjorie Guthrie


We Can Never Lose HOPE…………

Therese at the 2018 HDSA Annual Convention in LA.

I became an HD Advocate the day I decided to marry John.  I wrote the nonfiction book, WatchingWatching the Dance Huntingtons Disease Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to help in the fight against HD.

100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is:  https://www.theresecrutchermarin.com



Palliative Care

The Confusing Word” Palliative Care”

The term “Palliative Care” has been confusing to folks for a long time. The last ten years of my healthcare career was in hospice at our community hospital and we used “palliative care” synonymously with “hospice care”.  As I was retiring, a change was happening in the healthcare world and the change could help folks with chronic illnesses, like Huntington’s disease (HD).

When attending the Huntington’s Disease Society of America (HDSA) Annual Convention in Boston Massachusetts last June, I loved that there was a session on Palliative Care.  If you would like to watch the session, it’s about 55 minutes long, please visit:  https://vimeo.com/345957809

Andrew Esch, MD was the presenter and he is board certified in Internal Medicine with a subspecialty in Palliative and Hospice Care.

 Click here to read about Dr. Andrew Esch

Palliative Care is not just a concern for Huntington’s Disease (HD) families, it’s information we all need when family, friends are facing their mortality.

So what is Palliative Care?  The Mayo Clinic definition is: “Specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Palliative care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments you may be receiving.”

Palliative care is provided by a team of doctors, nurses and other specially trained people. They work with you, your family and your other doctors to provide an extra layer of support that complements your ongoing care.

The Difference Between Palliative Care and Hospice. Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment.

Kaiser Permanente has a palliative care program.  https://healthy.kaiserpermanente.org/palliative-care

Sutter Health has a program:  https://www.sutterhealth.org/services/palliative-advanced-illness-management

Dignity Health:  https://www.dignityhealth.org/sacramento/services/palliative-care

Mercy:  https://www.mercy.net/service/palliative-care/

Check with your hospital system or talk with a Huntington’s Disease Social Worker in your area to find out more about when palliative care is appropriate for your loved one.

We Can Never Lose HOPE…………….

   100% of the profits from the book goes to the nonprofit HDSA.  I’ve gifted over $14,000.00 to HDSA since I published in 2017.  You can find it on many book websites like Amazon:






HD Research, Helping Others


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.