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May is HD Awareness Month

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/