A Love Story, The Marin Siblings

That’s How Love Moves

That’s how love works………That’s how love moves……..

Like a river running through you………lyrics from That’s How Love Moves by Faith Hill.

Once John wrapped his arms around me, I was never the same.  He saw something in me that I never knew I had…………………. courage.  Courage to love despite the enormous challenge that lay ahead in the years to come.

The challenge?  Huntington’s disease (HD); the cruelest disease on the planet.  A rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers, and Parkinson’s at the same time and their is NO CURE.  John and his three (3) sisters were at risk, a 50/50 chance, for inheriting the horrific disease that destroyed their mother.  What is Huntington’s disease?

Lora, Cindy and Marcia Marin

The unconditional love I had for the Marin siblings and the love John had for me, saved me; saved me in every way possible.  Love kept me grounded, even during the worst of times when I was desperate to escape from the 24-year nightmare; watching his three sisters battle HD.

We Can Never Lose HOPE……..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

 

 

 

Mindful

More On “It’s The Little Things In Life”

Author Therese Crutcher-Marin

I believe that recognizing and embracing the little things in life every day is important to our happiness. I explain it in my nonfiction book. 

Watching Their Dance:  Excerpt from page 61, Chapter 7

John and I had just gotten married and back from the honeymoon and settling into our apartment in Roseville California.

Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together.  Little would they know the challenge that lay quietly beneath our joy.  Every day, I consciously reminded myself to live in the present moment.  It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me.  Those moments were precious, and I selfishly saved them just for me.”

 

We Can Never Lose HOPE…………….

Therese’s Author Website:  https://www.theresecrutchermarin.com

 

 

 

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………………

 

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….

 

 

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….

LOVE & PEACE! In the NEW YEAR!

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