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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    

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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

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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

 

 

The Woody Guthrie Family

More About Woodrow Wilson Guthrie

Woody Guthrie was a very interesting and talented man.  I think he accomplished more in his 55 years on this earth than most people do in 80-90 years.

During his short, tumultuous life Guthrie was a writer, union activist, performer, social commentator, story teller, and composer of over 1000 songs.  He was also a poet, and author. When John and I visited the Woody Guthrie Center in Tulsa Oklahoma, we saw his work.  He was a brilliant man.  https://woodyguthriecenter.org/

The timeline of Woody’s life, can be seen here: https://library.uoregon.edu/ec/wguthrie/timeline.html

I had the privilege to present a “book discussion” at the Woody Guthrie Center.  I had just published the nonfiction book, Watching Their Dance.

With that said, I’ll tell you about Woody’s private life.  Woody’s mother, Nora, had Huntington’s disease and was placed in Oklahoma Hospital for the Insane.

At age 19, Guthrie met and married his first wife, Mary Jennings, in Texas in 1931. They had three children together: Gwendolyn, Sue, and Bill.  Bill died at age 23 of an automobile accident. Each daughter died of Huntington’s disease at the age of 41, in the 1970s.  Guthrie and Mary divorced in 1940.

He married twice more, to Marjorie Greenblatt (1945–53), they had daughters Cathy and Nora; and sons Arlo and Joady.  Cathy died in a fire.

Woody married Anneke Van Kirkand (1953–56) and had a daughter; having a total of eight children.  https://en.m.wikipedia.org/wiki/Woody_Guthrie

Woody was hospitalized at Greystone Park Psychiatric Hospital in Morris County, New Jersey, from 1956 to 1961; at Brooklyn State Hospital (now Kingsboro Psychiatric Center) in East Flatbush until 1966; and finally at Creedmoor Psychiatric Center in Queens Village, New York, until his death in 1967.

 

We Can Never Lose HOPE……

100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America. You can purchase it on Amazon and many other book websites.  My author website is https://www.theresecrutchermarin.com

 

Therese-Author

Miracles Happen Every Day

Sometimes we witness a miracle, a wonder, and overlook the meaning/purpose/impact that the experience can have on our lives. I think folks think of a miracle as a tremendous, jaw dropping event.  To appreciate these special moments in my life, I have changed my perception of what a miracle is.

An encounter I experienced this week at the Homeless Center was about a young man who I’ve seen many times.  I’m an interviewer, asking what services they need that day and I feel I’m a sounding board acknowledging their story, plans, and goals.  The young man,  who I have seen many times, shared that he had been sober for 14 days and that he was being admitted into a 90-day rehab program in a couple of weeks.  I consider this a miracle, so, I congratulated him, gave him a hug, and wished him well.

A while back, one of John’s cousin’s made a statement that made me ponder for a moment, and recognize that what happened in my life was indeed a miracle. The conversation was about divorces in our world today.  The cousin said, “It’s a miracle that you and John didn’t divorce with all you have been through”.  I had to agree.

                              

We Can Never Lose HOPE………….

I’m a Huntington’s Disease advocate having lost my three sisters-in-law to this horrific disease that has no cure.  100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA), to help in the fight against the disease.  What is Huntington’s disease:  http://www.hdsa.org

To purchase the book, go to https://www.amazon.com/Watching-Their-Dance-Marrying-Huntingtons.  It’s also available on many other book websites.

 

HD Advocates

The Woody Guthrie Advocacy Award

This year the Huntington’s Disease Society of America (HDSA) Annual Convention was held in Boston MA.  John and I flew to Boston and on Thursday I attended Leadership Day where leaders of chapters and affiliates meet and learn from the HDSA staff. I was able to attend since Amy Fedele, several other Huntington’s Disease (HD) advocates, and myself are organizing a HDSA San Francisco Bay Area Affiliate.

For the next two days, the attendees choose sessions that are of interest; i.e. Ask the Scientist….Anything, Bringing Kids into Your HD Family, Palliative Care, Catapult Your Volunteer Work in Your Community, Growing Up with HD and many other valuable topics. 

On Saturday evening, a Gala is held to close the Convention and HDSA awards are given out by Louise Vetter, HDSA CEO and President, for many categories; Youth Award, Affiliate of the Year Award, Chapter of the Year Award, Marjorie Guthrie Award, Researcher of the Year Award and several others.

HDSA 2019 Convention

It was at this event, I received the surprise of my life. As I sat next to John and Denny Cone, the HDSA Pacific Region Development Manager, Louise said, “The Woody Guthrie Advocacy Award is being given to a a woman who in 1978 her college sweetheart and his three sisters, discovered their mother had Huntington’s Disease……….   My eyes grew wide and I snapped my head toward Denny.  All I remember after that is pushing my chair back, standing like a robot and walking toward the stage.

I’m honored to receive the award and I will continue to be a Huntington’s Disease Advocate until I have no breath in my body.

  

We Can Never Lose HOPE……………

100% of the proceeds from Watching Their Dance is being donated to HDSA to help in the fight against HD.  Since the book was published in April 2017, I have gifted over $14,000.00 to HDSA.

HDSA Fundraising events

10K Timed Run for Huntington’s Disease-June 22 in Campbell CA

The 1st San Jose Team Hope 5K Walk & 10K Timed Run is fast approaching! 

Mark your calendars and help in the fight against the cruelest disease on the planet; Huntington’s disease (HD).  What is Huntington’s Disease?

To register, go here:  http://www.hdsa.org/thwsanjose

Walkers are: $25, 10K Runners: $60, Children under 12 are: $10.

The San Jose Earthquake Soccer organization, “The Quakes”,  will have games and prizes at the event.  https://www.sjearthquakes.com/        https://twitter.com/SJEarthquakes

The dollars from this fundraiser supports the nonprofit, Huntington’s Disease Society of America (HDSA)’s mission to help everyone affected by Huntington’s disease and their families by providing local services and programs in the San Francisco Bay Area.

     

We Can Never Lose HOPE…………….

Amy Fedele and myself at the HDSA NorCal Chapter Team Hope Walk

    

 

 

Love, Taking Care of Yourself

Denial-A Coping Mechanism

Lora, Cindy and Marcia Marin

Definition of Denial.  “The action of declaring something to be untrue.”

I must admit, at times, I lived in denial.  Denial isn’t a bad place, only if you stay there forever, but for me, that place gave me solace for a short time. Article on Denial:  mayoclinic.org/healthy/denial

When situations became unbearable, that is where I sought to be.  When Lora died because of Huntington’s disease (HD), when Marcia had a stroke because of Huntington’s disease, when Cindy was diagnosed with Huntington’s disease, I went to my special place, denial, to regroup, gather strength and recharge. What is HD? https://hdsa.org/#

To be present and help my three sisters-in-law have the highest quality to their life, for as long as possible, escaping to my denial place helped me cope and face another day.

The nonfiction book I published was written in Lora, Marcia, and Cindy’s honor.  100% of the proceeds are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against the cruelest disease on the planet.  Author website:  https://www.theresecrutchermarin.com

 

We Can Never Lose HOPE………………..

About Author, Hope

How Huntington’s Disease Enriched My Life

This statement may seem ridiculous given the statement I’ve created for Huntington’s disease (HD); “the cruelest disease on the planet”. I have not changed my mind regarding the statement but HD transformed my way of thinking, in a positive manner, really, without me even knowing it. WhatisHD

After I’d made the decision to marry John, who had an unknown gene status for HD, I realized, in order to not lose my mind with worry, I had to retrain my brain; first, to learn how to live in the moment. how-train-your-brain-think-differently

I learned to embrace what I had right in front of me; John, our love for each other, the life we were building together, and the hopes and dreams we hoped to achieve.

I learned not think too far ahead and what that might mean because nobody has a crystal ball; for my sanity, this moment, this day is what I focused on.

I didn’t learn these things overnight; it took time to transform my way of thinking since I’m a planner, a very detailed planner.  

Like a caterpillar’s transformation into a butterfly, it takes time to relearn how to think. 

We Can Never Lose HOPE……………

Resources

Huntington’s Disease Support Groups & Online Support Groups

Ts sign up for the ONLINE support group, go to this website:   https://www.supportgroupscentral.com/groups_

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The UC San Francisco Huntington’s Disease Clinic website:  https://www.ucsfhealth.org/clinics/huntingtons_disease/

UC Davis HD Clinic website:  https://health.ucdavis.edu/huntingtons/

Kaiser HD/Genetic Movement Disorders, Sacramento: https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp

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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).  Therese has  donated $14,115.00 to HDSA which was the profit from book/ebook sales since April 2017 when it was published.  .amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208
 

 

 

 

Taking Care of Yourself

5 Things You Should Know About Stress

Stress is part of our lives whether Huntington’s disease (HD) affects your family or not. I’m always on the look out for tips on managing stress, especially before we knew John’s gene status for HD. We are grateful and thankful for his negative status; he tested in 2016. What is Huntington’s disease

John & I at Keith/Fran wedding

Here are five (5) things you should know about stress:

Author Therese Crutcher-Marin
  1. Stress affects everyone. Some people may cope with stress more effectively or recover from stressful events more quickly than other.
  2. Not all stress is bad. Stress can motivate people to prepare or perform, like when they need to take a test. Stress can even be life-saving in some situations.
  3. Long-term stress can harm your health. Health problems can occur if the stress response goes on for too long or becomes chronic.
  4. There are ways to manage stress. The effects of stress tend to build up over time. Find ways to help deal with stress.
  5. If you’re overwhelmed by stress, ask for help from a health professional. http://www.nimh.nih.gov Nat’l. Institute of Mental Health Publication #OM 16-4310
We Can Never Lose HOPE…….
HDSA

Compassion Use/Right to Try

The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information.  http://hdsa.org.

Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.

On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue.  Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”

At this time all Expanded Access and Right-To-Try requests to Roche will be denied.  This was discussed in the recent HD Community-wide letter that was released by Roche in June.  Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible.  However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests.  The company Roche/Genentech

https://www.bna.com/righttotry-doesnt-help-n57982092983/

We Can Never Lose HOPE…..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, HDSA. https://theresecrutchermarin.com/purchase-book/