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/

On Writing

My Dream

We all have dreams and the dream for my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is to accomplish four very important goals.      

The first goal was to write John and my story to show the world what it’s like to live in the shadow of Huntington’s disease for 38 years and the conscious choices we made to fully live our lives everyday.  http://www.rd.com/health/wellness/mindfulness-tips/

The second goal was to honor and create a legacy for my three sisters-in-law, my friends, Lora, Marcia and Cindy, who were struck down at an early age by Huntington’s disease. They were amazing, kind, brave women who loved me unconditionally.

The third goal was to use the book as a tool to heighten awareness of Huntington’s disease around the world. Amazon, with their 11 websites allows me to promote my book across the globe.

The fourth goal was to create a continuous revenue stream to the many Huntington’s disease organizations. John and I will be promoting the book and donating the proceeds to HD organizations for many years to come. i.e. HDSA  http://hdsa.org , Huntington’s Society of Canada  https://www.huntingtonsociety.ca/ , Huntington’s Disease Association UK https://www.hda.org.uk/ , Scottish Huntington’s Association  http://hdscotland.org/ , Huntington’s Disease Association of Ireland  http://www.huntingtons.ie/

To purchase Watching Their Dance, please visit my author website at   http://theresecrutchermarin.com/purchase-book/

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We can never lose HOPE…………..  Therese

 

 

 

 

Huntington's Disease

Interview with Paul Wallis at Digital Journal

Paul Wallis, aka Wanderlaugh and journalist, is Digital Journal’s Editor-at-Large for Op-Eds based in Sydney Australia. He says he’s a, “General nuisance and inner city gargoyle. I write books, (I’ve published 12 on Amazon and one on Smashwords.)  I play music, do graphics, and am roughly about that antisocial. I may well be literature’s answer to Gidget”.

After the first of the year, Paul and I connected on Facebook having eight mutual friends whose lives have been touched by Huntington’s disease.  He asked if I would do an interview about my family’s experience with the disease. He sent me a list of questions and stated there was no word count limit which gave me freedom to explain questions in great detail. The only request I had was to wait to post the interview in Digital Journal until my book was published and available, which he granted.  If you’d like to read the complete interview, please click on the link below.

http://www.digitaljournal.com/life/health/new-book-about-huntington-s-disease-watching-their-dance/article/489828

Here is how the interview began.  What was the strategic objective in writing your new book?

In 2008, John and I had lost his third sister to Huntington’s disease and we were both struggling with tremendous complicated grief over the death of John’s entire immediate family. John and I had witnessed the decline and death of his three sisters by Huntington’s disease for over 25 years. In March of 2010, I began to develop an idea for a book that would ultimately serve many purposes.

First, writing the story would allow me to heal, and secondly, the book would honor and create a legacy for the Marin sisters. A few years into the project, John and I decided to add a fundraising component to the book and donate the proceeds to Huntington’s organization around the world. It was our wish to generate a continuous revenue stream to help families struggling with the disease. And lastly, but just as important, the book would be a tool to heighten HD awareness.

Read more: http://www.digitaljournal.com/life/health/new-book-about-huntington-s-disease-watching-their-dance/article/489828#ixzz4gsDQNKfN

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We can never lose HOPE……  Therese

Marketing, Watching Their Dance

Amazon Reaches Readers Around the World

 

Promoting my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, around the world just made sense because Huntington’s disease affects approximately 4 million people worldwide. Because Amazon operates 11 online marketplaces (websites) I can offer the book internationally.

For example, when my book is purchased on Amazon Canada  https://www.amazon.ca/  I will donate my profit/ royalties to the Huntington’s Society of Canada.  It really doesn’t make a difference to me who I donate to because all the HD organizations around the world have the same goal: Help families dealing with Huntington’s disease and contribute to research.

So, if you live outside the U.S., please go to an Amazon website to purchase the book, and I’ll donate $3.50 to a non-profit HD organization in the country where you live.

If you live in the U.S., please go to my author website, http://theresecrutchermarin.com/  to purchase it and I will donate $7.00 to HDSA.   Thank you!

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We Can Never Lose HOPE…………..  Therese

Photo credit: topgold via Foter.com / CC BY

Marketing

How Important is an eBook to an Author?

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is now available in ebook format. The experts say all authors should offer their books as an ebook because so many folks read on devices now.  Our daughter, Vanessa, buys from iBooks and a friend of mine at the gym reads off her Nook device.  I’ve read a couple of books on my iPad but I still enjoy holding a book in my hand.  On my author website http://www.theresecrutchermarin.com you can purchase a pdf file or an ePub for $6.99 which I will donate to the Huntington’s Disease Society of America.

I thought the history of ebooks was interesting. http://historycooperative.org/a-history-of-e-books/  Also, here’s a good article in the trends in the book industry:  https://www.writtenwordmedia.com/2017/01/04/top-ten-trends-in-publishing-every-author-needs-to-know-in-2017/

The following is a partial list of where my ebook can be purchased:

-24Symbols    -7Switch     All Romance eBooks     -Amazon    -Apple    -Artech House    -Asia Books   -Baker & Taylor Blio  -BOL.com    -Barnes & Noble     -BookShout (Rethink Books)     -Bookmate    -Bookshop Krisostomus                    Booktopia  -Campus eBooks    -Cokesbury.com -Completebook.com  -Covenant  -DMC        -EBSCO    -ebook.de Internet GmbH     -eBookMall  -eBookShop   -FeedBooks    -Five Senses Education Pty ltd     -Follett  -Gardners      Global Reward Systems -Glose    -Hastings     -Hummingbird DM    -iBooks   Infibeam      -Inkterra       -Inktera    -Juke Entertainment GmbH     -Kobo PaperC      -KIOWPPE    -lwemi.com  -Redshelf     -Rockstand (RockASAP)        Sainsbury      -Txtr      -Wook      -Zola     -A book Company

Have a good day!  Therese

 

 

 

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Storytelling

Watching Their Dance-Excerpt from Chapter 7

This except from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s takes place in Sept. 1980 just after John and I returned from our honeymoon.  My mom and grandmother were visiting and helping me set up our new apartment in Cirby Woods Apt. complex in Roseville California.

“On my last day before returning to work, my mother and grandmother were helping us get settled.  Mom was in the kitchen unpacking wedding gifts; since she felt everything needed to be washed first, the dishwasher had been running all day. My parents had accepted my happiness and never brought up any pessimistic or negative feelings about our future.  I walked into the kitchen and gave my mother a hug. ‘You might want to take a break Mom.’

When John came home from work, he practically shouted. ‘Wow, the apartment looks great! I can’t believe how much you got done.’ Mom and Grandma were sitting on the couch with their feet up on the coffee table, looking tired. John sat down between them, wrapped an arm around each, and said, “Let’s go to dinner. I want to take you girls out to thank you for all your help.”

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. 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.”

Watching Their Dance, hard book, can be purchased on my Author Website when you live in the U.S.  Otherwise, it is available on Amazon.  ebook is available on my website and also on ibooks, kindle, kobo, nook, B&N, Smashwords.  http://theresecrutchermarin.com/purchase-book/

We Can Never Lose HOPE……………………….Therese