Browsing Tag

#huntingtonsdisease

HDSA Northern California Chapter

Help for Today…..Hope for Tomorrow

The Huntington’s Disease Society of America (HDSA) slogan resonates in my soul and I feel privileged to be associated and work with the awesome people on HDSA Northern California Chapter Board of Directors.  They share the same passion as mine; we are dedicated to improving (help) the lives of everyone affected by Huntington’s disease (HD).

There are many other wonderful Huntington’s disease organizations helping families around the world.  Here are a few:

http://www.hdsa.org  

Help4HDInternational

http://www.huntingtonsdiseasefoundation.org/

https://www.wehaveaface.org/

https://www.hda.org.uk/  

HOPE was so important to John and my survival as we watched his three sisters struggle with HD.  I always felt Hope was more than optimism; more than positivity.  I love this definition of HOPE by Dr. Andrew uses from the book The Anatomy of Hope:

Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that things will turn out for the best. But hope differs from optimism. Hope does not arise from being told to think positively, or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see—in the mind’s eye—a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

John and I donated $9,015.00 to HDSA in December which was the profit from books sold in the U.S. since I published in April 2017.

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Watching the Dance Huntingtons Disease
Therese-Author

Free Gift With Purchase of Book “Watching Their Dance:”

When you purchase my book, Watching Their Dance, on my AUTHOR WEBSITE, www.theresecrutchermarin.com I will send you a dozen “Help Fight HD!/HDSA.ORG” wristbands.

For every book sold, in the U.S., I donate $7.00 to Huntington’s Disease Society of America (HDSA).   http://www.hdsa.org 

          

For those outside the U.S., the book is available on Amazon around the world.

Canada:   https://www.amazon.ca/   United Kingdom:  https://www.amazon.co.uk/

France:  https://www.amazon.fr/   Italy:    https://www.amazon.it/

Germany/Netherlands https://www.amazon.de/   Spain https://www.amazon.es/

Mexico:   https://www.amazon.com.mx/   Japan:    https://www.amazon.co.jp/  

We Can Never Lose HOPE………….

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s “A poignant remembrance of a love forged in crisis”. Kirkus Review   https://www.kirkusreviews.com/  

You can also find the book on Amazon.com   https://www.amazon.com/-/e/B06ZY85776  

 

 

 

 

Family, HDSA

2018 HDSA National Convention

I received this brochure in the mail from Huntington’s Disease Society of America (HDSA) the other day to register for this years National Convention in Los Angeles and I thought I’d share it.  (See below to print a copy)  I will be attending as a Board Member of the Northern California Chapter and I will also be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://hdsa.org/about-hdsa/annual-convention/ 

Highlights from 2017 Convention:  http://hdsa.org/about-hdsa/annual-convention/2017-2/

To print a copy of the brochure, click on these 2 links:

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-2-1-e1518459511757.jpeg  

  http://theresecrutchermarin.com/wp-content/uploads/2018/02/Scan-3-1.jpeg  

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from books sold in the U.S. will be donated to HDSA.  John and Therese donated $9,015.00 in December which was the profit from books sold since Therese published April 2017.

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Helping Others

Sacramento Huntington’s Disease (HD) Support Group

People have asked me why I attend the monthly HD support group in Sacramento when I currently do not have anyone affected by the disease?  Yes, my three sisters-in-law are gone, stolen from us by the insidious HD, but they are not forgotten.

I take part in the meetings in honor of Lora, Marcia and Cindy’s struggle with HD.  For over 25 years, John and I lovingly cared for and helped his three sisters through the disease process, without a support system, as neither a support group nor HDSA Center of Excellence existed in the late 1980’s and 1990’s in the Sacramento area.

Being present for those struggling with HD, listening, acknowledging their experience, pain, fears and doubts, and offering advice, gives me peace.  I will always have compassion in my heart for HD families, and have a need to help in some small way, because I know what they are going through.  If I could have talked with a HD family that was going through what John and I were experiencing, it would have been life changing for me.

If you’re considering joining a support group, this article might be beneficial to you:      http://davidsusman.com/2015/04/23/9-benefits-of-support-groups/  

Click on link for a larger picture of the list of support groups in Northern California:   https://www.ucdmc.ucdavis.edu/huntingtons/files/support_groups.pdf  

HDSA also offers free ONLINE SUPPORT GROUP MEETINGS.  To register please go to:   http://hdsa.org/osg/

We Can Never Lose HOPE………………

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from books sold in the U.S. are being donated to HDSA.  John and Therese donated $9,015.00 last December which was the profits from books sold since Therese published in April 2017.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

 

 

 

Family, Love

A Message from Author Therese Crutcher-Marin

Many of you know I’m involved in the Huntington’s disease community and a board member on the HDSA Northern California Chapter.  Until I published my book, Watching Their Dance, I was unable to speak about John and my life at-risk for the cruelest disease because of the grief I carried in my soul.  Writing my story was a healing journey which allowed me to place the grief in a book and show the world what Huntington’s disease families go through for generations.    http://www.hdsa.org    

The following are reasons why I wrote the book and outcomes since I published April 2017.

  1.  The book is a personal HD fundraiser/HD awareness project and 100% of the proceeds from books sold in the U.S. are being donated to Huntington’s Disease Society of America (HDSA) to help in the fight against this horrific disease that killed my mother-in-law and 3 sisters-in-law. By heightening awareness, I hope to increase donations from folks who have never donated to our cause.
  2.  It’s an inspirational love story, over 38 years, and how John and I lived in the shadow of Huntington’s disease.  Since April 2017, I’ve sold 1,500 books/ebooks and my goal is 5,000. My book can be found on my Author Website: www.theresecrutchermarin.com, Amazon, B&N and other book websites.  $7.00 is donated to HDSA each time the book is purchased.
  3.  John and I donated $9,015.00 to HDSA in December 2017 which was the profit from books sold since I published in April 2017. 

We Can Never Lose HOPE………………..  

Woody Guthrie Festival 7-2017

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On Writing

Is EDIT Really a 4-Letter Word?

Authors hate editing. We hate it more than being interrupted or staring at the wall, frozen and unable to type a word. It is, unfortunately, the most important thing we do, once the story is down on paper. It’s time-consuming and hard and creates more work, but essential to creating a polished manuscript.

Editing needs to be done in four stages.

  1. SPELL AND GRAMMAR CHECK-Start slow. Drink coffee. Use the spell check and grammar available through your document writing software.
  2. EDITING SOFTWARE-Use a good software program for the second pass–preferably one that is not biased concerning Microsoft or Apple. There are editing programs on the web.
  3. READ ALOUD-Phase three has you in the driver’s seat once again. You must read it to yourself; page by page, and line by line. If you can do so aloud, all the better.
  4. HIRE AN EDITOR-Put another set of eyes on the manuscript. Yours are too used to your writing, too familiar with the story and will not catch the simplest of things such as a backward quotation mark.

To read full article:   http://www.bookdaily.com/authorresource/blog/post/2001431  

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.  100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.  

We can never lose Hope………………..Therese

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Marketing

Authors Cannot Ignore ePub Readers

I’m sharing information about the importance of ePub (ebook) readers that I learned on my journey with the hope aspiring authors will pay attention since the ePub (ebook, i.e. Kindle, Nook) readers is my largest audience.  John and I don’t read on devices but many folks do in the United States.  I didn’t realize, until I saw it with my own eyes, and with my own book, how many people don’t purchase hard copies of books.

So what’s my point?  The fact that the ePub market for authors cannot be ignored if you want your book to be successful.

Here is a breakdown of units sold for Watching Their Dance, my nonfiction/memoir, in the last eight months to back up this statement regarding ebooks:

Since April 2017, I have sold (approximately as the numbers are always changing):

To offer your book on Amazon  Kindle Direct Publishing  program you need to convert the file to a MOBI file. I didn’t know how to do this, so IngramSpark converted my file to an ePub and then my book designer converted the ePub into a MOBI file.  It cost me approximately $400.00 to have it converted and downloaded on Amazon Kindle Direct Publishing.  It was totally worth it.  Kindle 

If you are not an ebook reader here is an article that explains electronic books.    http://www.explainthatstuff.com/ebooks.html    

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.

We can never lose Hope………………..Therese

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Fundraising

Heartfelt Donation to Fight Huntington’s Disease

John and I are so excited to share the good news. The nonfiction book I published in April, 2017, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, has generated a profit of $9,015.00 that we donated to Huntington’s Disease Society of America    to help in the fight against the cruelest disease on the planet; Huntington’s disease.

This is a video John and made in celebration!   https://youtu.be/6vQQefLcqi8     

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com    & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book is being donated to HD organizations around the world.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

 

 

Love

“Watching Their Dance”-A Poignant Love Story

 

“Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality. She also tenderly portrays the plight of his sisters—beleaguered not only by the deadly genetic inheritance, but also difficult childhoods stained by loneliness and abandonment. This is a rare treat—a true story that is as uplifting as it is heartbreaking.  A poignant remembrance of a love forged in crisis.”

To read the full book review, go to:  Kirkus Reviews   

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book is being donated to HD organizations around the world.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of my book, Watching Their Dance, via email.

 

 

About Author

Subscribe to Therese Crutcher-Marin’s Huntington’s disease Blog

      

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And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir.     http://www.theresecrutchermarin.com   

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 

100% of the proceeds from Therese’s book is being donated to HD organizations around the world.  

 We Can Never Lose HOPE………..  Therese