About Author

Living At Risk for Huntington’s Disease

Author Therese Crutcher-Marin
Christmas in 1976 when John & I were in college

No one can image what it is like to Live At Risk for the cruelest disease on the planet; Huntington’s disease. What-is-HD This rare, hereditary brain disorder, is like having ALS, Alzheimers and Parkinson’s at the same time, has no cure and strikes during prime working years. It’s difficult to understand, unless you have lived it.

This picture describes the process I went through when John and his three sisters discovered they were at risk for Huntington’s disease. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/

First, I had a CHOICE; to marry John and live a life AT RISK or turn away from him forever.

I took the chance & lived happily every after

Second, I took the biggest CHANCE of my life and married him knowing the possible consequences of my decision.

Third, in order to live fully everyday with the love of my life, I had to CHANGE my way of thinking.

Fortunately, John did not inherit the mutated huntingtin gene. huntingtin protein and protein-aggregation Huntington’s disease enriched my life because John nor I took anything for granted.

100% of the profits from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is being donated to the nonprofit, HDSA. Therese has gifted $14,100.00 to HDSA since publishing the book in April 2017. amazon.com/Watching-Their-Dance

We Can Never Lose HOPE….

About Author

The Truth About Living At Risk for Huntington’s Disease

“Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security.” ~John Allen Paulos

John and I lived AT RISK for the cruelest  disease on the planet, Huntington’s disease (HD), for 38 years.  It was in 2016, that John decided he wanted to know his gene status.  Many years ago, the genetic test became available in 1993, I asked him to have the test done, but he couldn’t, and I understood why.  5-tips-for-living-with-uncertainty/

Why wouldn’t John test, you ask?  The reason “why”was staring at both of us everyday for 28 years; that being the faces of his three sisters who died because of HD. John didn’t want to know; hope was what he and I clung to, as well as to each other.

Lora, Cindy, Marcia Marin

John’s oldest sister, Lora, my dear friend, was never tested or diagnosed because she began showing symptoms in 1982 and no test was available.  She became very depressed, a common first psychiatric symptom of HD.  Living AT RISK for Huntington’s disease was emotionally difficult for Lora and I  knew it and so did John and we tried to help but the stress lead to her demise.  Lora chose to self-medicate with alcohol, and, unfortunately, she drank herself to death.  We lost her in 1989 at age 41.  What-is-HD

I know how this sounds, morbid, but the world has no idea of what it is like to live with unimaginable uncertainty every day.  Living with the fact that your world could change overnight, how you could be struck down with the disease at the prime time of your life, and then, how you would slowly lose your ability to walk, talk and think over a ten to twenty period of time, is beyond the word difficult.  what-is-high-functioning-anxiety

It’s estimated that approximately 200,000 live AT RISK in the United States and an unknown number exists throughout the world. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is the story of how I survived living in the shadow of Huntington’s disease, waiting and watching ever so closely to see who of the four people I loved, would fall prey to HD;  John, Lora, Marcia and/or Cindy Marin. amazon.com/Watching-Their-Dance

Author Website:  http://www.theresecrutchermarin.com

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We Can Never Lose HOPE……

Huntington's Disease

Prevalence of Huntington’s Disease in the U.S.A.

Have you ever wondered where Huntington’s disease (HD) originated? Or why it’s predominantly found among Europeans and those of European descent? What-is-hd/

Europe

Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 40-100 per million people. (or 4-10 per 100,000)

Experts estimate that one in every 10,000 persons—nearly 30,000 in the United States—have Huntington’s disease. (10 in 100,000, 100 in a million). Juvenile Huntington’s occurs in approximately 16% of all cases. http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/

100% of the profits from the book, Watching Their Dance, an inspirational love story while living in the shadow of HD, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Since the book was published, in April 2017, Therese has donated $14,100.00 to the nonprofit, Huntington’s Disease Society of America.

Therese at the 2018 HDSA Annual Convention in LA.
Helping Others

Find Your Passion

Author Therese Crutcher-Marin

Finding your passion, and acting on it, I believe, is important to one’s happiness. Maybe it’s painting, writing, running, mentoring young people, teaching, helping the homeless, delivering meals to the elderly, volunteering for a your favorite charity, rescuing animals; anything that makes your heart and soul happy.

My passion is helping people. Most of my career was in healthcare, the last 10 years in a community hospice program. Focusing on a terminally ill patient’s pain and symptoms, allowing them to have the highest quality to their life for as long as possible fed my heart and soul. What is Hospice Care

Find your passion and incorporate it into your life. We live very busy lives, and adding a hour or two a week of your passion, can enrich your life.Inspirational-quotes-on-passion

We Can Never Lose HOPE………

$16.99

100% of the profit from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which was the profit since the book was published in April 2017. amazon.com/Watching-Their-Dance

HD Awareness

ASHG Chooses Huntington’s Disease as Topic for 2019 Essay Contest


The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April 25, 2019). This date commemorates the completion of the Human Genome Project in April 2003 and the discovery of the double helix of DNA in 1953. http://www.ashg.org/ 

This year HDSA was very pleased to learn that ASHG’s featured essay contest topic centers on Huntington’s disease, posing a thought-provoking question about the family ethics around diagnosis. We hope this contest will promote awareness of HD by encouraging applicants to learn more about it and to think deeply about the issues faced by the HD community. For more information on the essay contest, click here

If you know a high schooler who might be interested in applying, please direct them to this website and spread the word! Essays are due March 8th, 2019, and winners will receive prizes of $100 – $1000. 

$16.99

100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which is the profit since the book was published in April 2017.

WE CAN NEVER LOSE HOPE……

Huntington's Disease

Prevalence of Huntington’s Disease Around the World- In the U.K.

Have you ever wondered where Huntington’s disease (HD) originated. Over the years, I have been curious where and when it started appearing in people. So, I did some digging and discovered some interesting facts.

Europe has been highly significant to the history and study of HD. The greatest frequencies of HD are found in Europe and among populations of European descent. Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 4-10 per 100,000 people. HD-in-europe/#united-kingdom

Origins 
The United Kingdom (U.K.) is the hereditary origin of many of the first cases that were identified as Huntington’s disease (HD). Scholars have traced thousands of prominent cases of HD in New England, U.S.A., back to a few families that emigrated in the seventeenth century from Suffolk in England.

Currently, it is estimated the prevalence of HD in the U.K. is approximately 12.4 per/ 100,000. Since this is a conservative estimate, which only includes people in contact with the Huntington’s Disease Association (HDA), the true prevalence of HD in the U.K. must be even higher. 

The HDA website has a wealth of information on Huntington’s disease in the United Kingdom: https://www.hda.org.uk/

We Can Never Lose HOPE……

HD Awareness

BBC-Call the Midwife

Author Jennifer Worth

I’m always watching for television shows that bring a Huntington’s disease storyline into a program. One evening I was looking at Netflix series and Call the Midwife, a BBC television show, caught my interest. It’s based on a trilogy by author Jennifer Worth.

It soon became one of my favorite shows. Then, quite by accident, I discovered Huntington’s disease (HD) would become a storyline in season 7; actually I saw a post on Facebook. “Call the Midwife” viewers left heartbroken after character is diagnosed with Huntington’s disease” call-midwife-season-7-episode-3-recap Currently, I’m watching season 5. I look forward to watching it. what-is-hd?

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE……….

100% of the profits from Watching Their Dance is being donated 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
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/