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May is HD Awareness Month

May is HD Awareness Month

Woody Guthrie & Huntington’s Disease

Did you know Woody Guthrie died of Huntington’s disease?  He died in 1967 and soon after that, his wife, Marjorie Guthrie, organized the Committee to Combat Huntington’s Disease (CCHD) that evolved into the  Huntington’s Disease Society of America (HDSA). 

You can download and read Marjorie’s story:  Finding Our Way  The Story of Woody and Marjorie Guthrie’s Fight Against Huntington’s Disease.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin Book Signing in Auburn CA

 

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA. Since publications, I’ve donated over $14,000.00.

You can find Watching Their Dance on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance and Author Website http://www.theresecrutchermarin.com

Read a review. Kirkus Review:  www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

May is HD Awareness Month

#LetsTalkAboutHD

We Can Never Lose HOPE……

Therese at the 2018 HDSA Annual Convention in LA.

My name is Therese and I’m an author and a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  Since publication, I have donated over $14,000.00.

You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance 

And on my Author Website: http://www.theresecrutchermarin.com

May is HD Awareness Month

Mission Statement

Mission Statements are important to an organization.  So what is a mission statement?

A mission statement is a brief description of a company’s fundamental purpose.

Author Therese Crutcher-Marin

It answers the question, “Why does our business exist?”  The mission statement articulates the company’s purpose both for those in the organization and for the public.

The following are mission statements from Huntington’s disease organizations around the world.  The mission statements are very similar; HD education, provide resources, family, advance research, importance of quality of life, enriching care.  

Help 4 HD https://help4hd.org/

To educate the world about Huntington’s disease and Juvenile Huntington’s disease through its multimedia communications platform and through community outreach efforts. The aim is to serve resource centers to provide information, education, resources, and care.

HDSA: http://www.hdsa.org

To improve the lives of everyone affected by Huntington’s disease and their families.

Huntington’s Society of Canada:  https://www.huntingtonsociety.ca/

Family is at the heart of our community. Our families and volunteers tell a powerful story of caring people who pull together to improve the quality of life for Canadians impacted by Huntington disease (HD). HD is a fatal hereditary brain disorder with devastating effects on both the mind and body. It is like having the symptoms of Alzheimer’s, Parkinson’s and ALS all in one disease.

Huntington’s Disease Association: https://www.hda.org.uk

To enable everyone affected by Huntington’s disease to live life to their full potential by:

  • Improving care and support
  • Educating families and the professionals who work with them
  • Championing the needs of the Huntington’s community and influencing decision makers

Scottish Huntington’s Association (SHA): https://hdscotland.org/

A Scottish charity that was established by families living with Huntington’s disease (HD) in the late 1980s. Experiencing directly the dearth of services available to them, the organization pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.

Hereditary Disease Foundation:  http://www.hdfoundation.org/

To fund innovative research towards curing Huntington’s disease and impacting other brain disorders.

Huntington’s Disease Foundationhttps://www.huntingtonsdiseasefoundation.org

Dedicated to eliminating Huntington’s disease through advancement of research and funding the cure; raising HD awareness; enriching care and support for all affected while improving quality of life.

European Huntington’s Disease Network:  http://www.ehdn.org

The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD. Through the EHDN a platform has been created such that basic scientists, clinicians, patients and families can collaborate on academic and industry studies to fulfill its mission.

CHDI Foundationhttps://chdifoundation.org

To develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.

We Can Never Lose HOPE……

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

May is HD Awareness Month

May Is Huntington’s Disease Awareness Month

Many people have no idea that Huntington’s disease is the cruelest disease on the planet.  Let me tell you why.

  1.  HD is a neurodegenerative disease.  It’s a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  Examples of neurodegenerative diseases include Parkinson’s, Alzheimer’s, and Huntington’s disease.
  2. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.
  3. 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.
  4. HD devastates families for generations since it is genetic.
  5. HD financially cripples families.  The average length of survival after clinical diagnosis is typically 10-20 years, but some people have lived thirty or forty years. Late stage HD may last up to a decade or more.
  6. 16% of all HD cases are children with Juvenile Huntington’s disease.                                             
  7. There is NO CURE.

For more information on Huntington’s disease, go to:  Huntington’s Disease Society of America

100% of the proceeds from my book is being donated to HDSA. So far, I’ve donated over $14,000.00.  amazon Watching-Their-Dance-

               

May is HD Awareness Month

Amazon Author Page

Even though I’m asking folks to purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s on my author website, since the profit margin is larger to donate to HDSA, I have to admit Amazon.com https://www.amazon.com/ is a wonderful resource for authors to get the word out about their book(s).  They offer online tools to help authors market their book because the brick and mortar bookstores are disappearing and most people buy books online now.

One such marketing tool Amazon offers to an Author who is selling their book on their site is an Author Page.  Please take a look at my Amazon Page.  It’s pretty cool! It’s another platform to promote myself on.   https://www.amazon.com/-/e/B06ZY85776

So besides having my Author Website http://theresecrutchermarin.com/   I now have an author website on Amazon.

Please consider contributing to my fundraising/HD awareness project by purchasing my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world. You can purchase it here:   http://theresecrutchermarin.com/purchase-book/

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Thanks for visiting my website!  Therese

Photo credit: Galería de ► Bee, like bees!

May is HD Awareness Month

LightItUp4HD

Around the world, folks are celebrating May as Huntington’s Disease Awareness Month.  For those of us whose lives have been touched by Huntington’s disease, it is an important time to focus our efforts on heightening awareness, raising funds, and remembering those we loved who lost the battle against the disease.

Huntington’s Society of Canada started the LightItUp4HD campaign in May 2015. The idea was born by Jamie – a volunteer from the Huntington Society of Canada (HSC) – who was instrumental in lighting up the CN Tower to raise the visibility of Juvenile HD (in purple) and HD (in blue) and Huntington Disease Awareness Month.

The following video shows the sites that were lit up in May 2016 to raise awareness.  https://www.youtube.com/watch?v=LNGOR1sstb0

Huntington’s disease organizations from around the world have joined this movement. Scotland, Ireland, and the United States, are just some of the countries participating in #LightItUp4HD this month.

Please take a look at the locations around the world being light up in blue and purple for this month.  It’s impressive.  https://www.huntingtonsociety.ca/lightitup4hd/

We can never lose HOPE…………Therese

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is John and my way of helping in the fight against HD. When you purchase the book, I will donate to a HD organization in the country where the book is purchased.  http://www.theresecrutchermarin.com

 

Family, May is HD Awareness Month

Excerpt from “Watching Their Dance”-Ch 10

One Saturday in June, the plan was for “the girls” to go shopping while “the boys” installed a hot tub in Lora and Dave’s backyard. When Marcia and Glenn drove up, Lora and I grabbed our purses and jumped into Marcia’s Datsun 280Z. Sitting in the back, I found a box of tapes and started to look through them. “Are these self-help tapes?” I asked.

“Yes. They’re from est, for Erhard Seminars Training. Werner Erhard’s ideas focus on personal responsibility, accountability, possibility, and transformation. All the big companies are sending their professionals to his five-day training classes, or buying the tapes.” http://www.wernererhard.com/est.html

Lora turned around from the passenger seat and took a couple from me. “How long have you had these, Moochie?”

“Pacific Bell bought them for me last month. It’s nice to listen to them while I’m driving to see a client. You can borrow them if you like.”

I admired Marcia’s determination and tenacity, knowing how she had moved up the career ladder at Pac Bell without a college degree. These tapes were no doubt another strategy to improve her expertise and expand her personal skills, but the timing was interesting.

At Macy’s, Marcia and I shopped for clothes while Lora disappeared into the housewares department. When we met her there an hour later, her face lit up as she showed us a Cuisinart food processor. “Look at this, you guys. Having this could save me so much time and energy.” She looked at the price tag. “Ouch!”

“Maybe it could be a business expense,” I said. “Do you and Anna ever think of starting that catering business you’ve been talking about forever?” Anna was an old friend from Martinez; in the late thirties, her mother had gone to Alhambra High with Big John.

“Oh, we’re still in the planning stage.”

I looked at Marcia. “I think your sister must be in heaven, thinking about cooking all day instead of working for the accountants.”

At lunch, Marcia said, “You know, Lora, having your own catering business has been your dream since you were in high school. You and Anna would make a great team. You should do it.”

I nodded vigorously. I didn’t know if Marcia was thinking what I was, but I couldn’t help adding, “Yes, Lora, you should go after your dream!”

None of us could resist ordering a piece of chocolate pie with our coffee. As I dug into mine, I noticed a twitch in Marcia’s shoulder; it was very slight, but it happened several times. Had Lora noticed it, too? I considered asking her if the opportunity arose, but I was pretty sure I knew how she would react. None of the Marins ever wanted to talk about Huntington’s disease.

We can never lose HOPE……………….Therese

To purchase Watching Their Dance; Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s go to http://theresecrutchermarin.com/purchase-book/

 

May is HD Awareness Month

HDSA Northern CA Chapter Convention

This Saturday, May 20, at a new location, the Nor Cal Chapter will host the 2017 Convention.  It’s being held at UC Davis Health Education Building, 4610 X Street in Sacramento, CA.   http://northernca.hdsa.org/

There will be 8 one hour workshops during two periods in the morning beginning at 10 AM.

Following the morning workshops, there will be a complimentary lunch followed by the afternoon sessions.

I joined the Board of Directors at the beginning of the year and I feel priviledged to work with these dedicated board members. i.e. Dick Hackenberg, Dawn Doster, Ed Cohen, Mark Stigge, Max Moon, Dawn Green, Les Pue, Andrea Hanson-Kahn, Louisa Burke and Martha Lehman.

This event is co-sponsored by the HDSA Center of Excellence at UC Davis Medical Center and is supported by an educational grant from Teva Pharmaceuticals.

We can never lose HOPE…………………….Therese

I will be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s at the convention and $7.00 from each book sold  will be donated to HDSA Northern California Chapter. The book can also be purchased on my website:  http://theresecrutchermarin.com/