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The Non Fiction Book

Global Online Retail Partners for “Watching Their Dance”

In the U.S., Amazon has 11 websites globally where Watching Their Dance can be purchased. Amazon   Amazon Kindle    

The book is also available on:  Barnes & Noble  Kobo    Nook and available in iBooks.

Via Ingram Book Group, IngramSpark titles are automatically made available to more than tens of thousands of retailers, libraries, schools, internet commerce companies, and other channel partners, including Chapters/Indigo (Canada), and other well-known book retailers and wholesalers across North America.  http://www.ingramspark.com/how-it-works/print-distribution-partners  

United Kingdom | Europe Australia & New Zealand   

 http://www.ingramspark.com/how-it-works/print-distribution-partners  

Ebooks

IngramSpark has E-book distribution from more than 70 online partners serving readers across the globe.   List of IngramSparks networks for ebooks

Watching Their Dance can be purchased on my Author Website in an ePub format and hard book.    http://www.theresecrutchermarin.com  

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 We can never lose HOPE…………Therese    

 

 

 

The Marin Siblings

Excerpt from “Watching Their Dance”

Chapter 17, page 147………………….

“When I woke up, Marcia, Cindy and John were at the kitchen table.  Marcia was giggling, and I was elated to see such a smile on her face.

What’s so funny?

Oh, we’re talking about Lora and the trouble she caused, Cindy said.  Remember the night the Mercury blew up, and the time she thought a convict was going to kill us all?  Lora always exaggerated.

I wondered if John and Cindy were laughing about the past, a common Marin coping mechanism, to defuse their own fears.  In addition to Marcia, how could they help being terrible afraid for themselves?

John couldn’t stop laughing.  Oh yeah.  She was coming home from Freddie’s Pizzeria late one night when the Mercury burst into flames, as Lora put it.  Dad should never have bought it, but when you’re a teenager, you don’t complain when you’re given a car, even if it’s a piece of shit.  Thank goodness, Uncle Jimmy was following her home.”

     

Lora, Marcia, Cindy and John were four mischievous little kids, left alone often by their father.  How could they not get into trouble?  Isn’t John cute!

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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.

Therese-Author

“Watching Their Dance”Generates Money to Fight Huntington’s Disease

The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a Huntington’s disease fundraising/HD awareness project, my passion,  which I began seven (7) years ago. The book was published in April 2017 and I was thrilled to hold a book in my hand a begin selling it around the world.

The book can be purchased on many websites and the royalties I receive are different for each:

On my Author websitehttp://www.theresecrutchermarin.com  a page exists to purchase the book, using PayPal. A hard book is $16.99, and an ePub file is $6.99, that can be read on every device but Kindle.

When you purchase on my website, my profit is $7.00 per hard book, and $5.00 per ePub.  These dollars are what I donate to HDSA and other HD organizations worldwide.

On Amazon.com,  https://www.amazon.com/   the royalty I receive on the sale of a hard book is $5.27.  Amazon prints on demand, handles and ships it, collects the tax if appropriate and keeps a certain % for their cut.

When I sell a book on Amazon Kindle, the price is $8.99 and the royalty I receive is $6.29 per file purchased. To date, I’ve sold approximately 800 Kindle’s.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is an inspirational love story, chronicled over 38 years, showing how John being at risk for HD impacted our life; how I coped and the tools I incorporated into my life to live fully everyday.

When you purchase the book, you are making a donation to help in the fight against Huntington’s disease.  Please go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

 

Photo credit: HowardLake via Foter.com / CC BY-SA

HD Research

Sign up for Enroll HD-It’s Important

One way that Enroll-HD is unique is that it is  designed to be a public resource shared by the whole  HD research community.  Enroll-HD is a global multi-center observational study of Huntington’s disease (HD). It tracks people over the long term who either have HD or who are at risk, to monitor how the disease appears and changes over time in different people.   https://www.enroll-hd.org/welcome/  

Most studies are restricted,  so that only the researchers who collect the information can get access to it to learn about the disease. Enroll-HD uses high standards to protect the privacy  of participants, so that anyone with a valid research  project can get access to data with all  potentially identifying information removed.  https://www.enroll-hd.org/  

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

2017 Book Tour

The Woody Guthrie Folk Festival-A Stop on our 2017 Book Tour

Last summer on our 3-month book tour through the Midwest in our RV, John and I attended the WoodyFest, July 12-16.  We had so much fun listening to music, meeting so many talented musicians who are keeping the spirit of Woody alive through their music. This year was the festivals 20th anniversary.    https://www.facebook.com/WoodyFest/ 

The Woody Guthrie Folk Festival is held annually in mid-July to commemorate the life and music of Woody Guthrie. The festival is held on the weekend closest to July 14 – the date of Guthrie’s birth – in Guthrie’s hometown of Okemah, Oklahoma. Daytime main stage performances are held indoors at the Brick Street Cafe and the Crystal Theatre. Evening main stage performances are held outdoors at the Pastures of Plenty.

At the festival, I met some incredible people from the HDSA Oklahoma Chapter; in particular Andrea Garrett, president.  We worked together, shared a booth all four days.

                       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 file.

100% of the proceeds is being donated to HDSA in the U.S. and to Huntington’s disease organizations around the world.

Marketing

A Christmas Gift Idea

                  

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 the book is being donated to HD organizations around the world.  

 

HD Research

Enroll in a Clinical Trial for Huntington’s Disease

 YOUR PARTICIPATION IS IMPERATIVE!!!!       

Through clinical trials, researchers are testing new ways to detect, treat and prevent Huntington’s disease. Recruiting clinical trial participants in a timely manner, as well as maintaining their participation in trials, is the greatest obstacle to developing the next HD treatment.

The entire HD community needs your help. Without participation, finding a cure is virtually impossible. Until a cure exists, the best possible way to fight back against HD is to participate in the research process. People with HD, caregivers and healthy volunteers are all needed today to participate in all aspects of HD and research.

When you join a clinical trial, you have an opportunity to participate in vital research that could change the course of this disease and improve the lives of all those it affects. Your participation in clinical trials provides hope for today and promise for a future free of HD.

If you are thinking about joining a clinical trial, talk with your family and doctor about what is right for you. Share the HD Trial Finder website or HD Trial Finder brochure with them so they understand how to use the service and the types of HD-related clinical trials being conducted across the country.  http://hdsa.org/hd-research/enroll-in-a-clinical-trial/

In the U.S., 100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to HDSA. Outside the U.S., the proceeds are donated to a Huntington’s organization in the country where the book is purchased.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

To listen to HDSA CEO Louise Vetter talk about the importance of enrolling, please see:   https://youtu.be/Oc2POI_VUBU  
HDSA

Marjorie Guthrie’s Crusade Against Huntington’s Disease

Marjorie Guthrie’s Philosophy-Wife of Woody Guthrie who suffered from Huntington’s disease

“There must be a strong, well supported National organization to assure the widest possible distribution of all our educational materials to the HD families, doctors, neurologists…to the whole scientific community and health professionals everywhere.  http://hdsa.org/about-hdsa/hdsa-history/ 

We must continue our search for HD families everywhere.

We must give active support to conferences dealing specifically with HD as well as related disciplines and disorders.

We must support and develop chapters in their local efforts and TOGETHER with National CCHD create the necessary financial resources to do the work that must be done.

We must begin a program, albeit limited at this time…to serve affected families wherever they may be….sometimes within the area of a chapter and when necessary beyond the capability of a chapter.

We must do everything possible to improve and expand our communications with our chapters…the public at large…..affected and non-affected families.

We must cooperate with existing health agencies and the federal, state and city government to improve the status of HEALTH and HEALTH PROGRAMS as a national priority.

All of these efforts must be done within the financial capability and responsibility of our membership.

Finally we must recognize that RESEARCH means many things. Any research in the areas of genetics and brain and central nervous system…however identified…may contribute ultimately towards a cure, control and early detection of HD.

To assist and help the implementation of this “philosophy”, we must secure and ensure the services of a professional executive who shall be responsible to our Executive Committee and/or Board of Trustees and to the “philosophy” expressed.”      https://bluerailroad.wordpress.com/marjorie-guthrie-on-life-with-woody-guthrie/ 

LOVE & PEACE,

 

Therese’s first book is a memoir/nonfiction, 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 file.

We can never lose HOPE…….Therese  

100% of the profits from Therese’s book is being donated to HDSA.

 

Huntington's Disease

Update on the Huntington’s Disease Parity Act

Max Moon, board member of the HDSA Northern California Chapter, keeps the board updated on the HD Parity Act.  Here’s his latest report.

  1. HDPA currently has 101 cosponsors in the House, 3 in the senate, and we are looking to push that number up even further. We need more republicans to sign on to the bill in the House and Senate to push the bipartisan support for the bill. We have several Dems who want to sign on in the senate but are holding off until we get another republican member to join in. If you have friends, loved ones, relatives affected by HD who live in states with Republican Senators, especially Tennessee, you can write to their members of Congress on their behalf! You can go to www.hdsa.org/takeaction and use the zip code of your loved one to send a message on their behalf.
  2. We are still looking for a useful healthcare reform bill to come out of the House or Senate, we are deeply concerned about the discontinuation of the CSR payments by the current administration, and know that for families who have found healthcare on the exchanges it will inevitably drive up healthcare premiums significantly for families that cannot afford it. We are watching the Alexander/Murray bill to see what kind of reforms will be included in the bill and are hopeful that a bipartisan approach will find a path to reforming our healthcare system that will help HD families.

HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals.  Jennifer Simpson, HDSA Manager of Advocacy & Youth Programs.  Jennifer is on the left with hands in the air.     http://hdsa.org/about-hdsa/advocacy/  

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

Marketing

A Huntington’s Disease Billboard

A few weeks ago, the Huntington’s disease community witnessed a Huntington’s disease (HD) billboard go up in South Bend, Indiana funded by the Huntington’s Disease Foundation.  I was very excited as were many others.  Billboards

I personally believe billboards are a great way to advertise.

When I worked in hospice, one component of my job was developing a yearly marketing plan for the outreach hospice committee to follow. I brought the idea of using a billboard to promote hospice care to my boss, but, unfortunately was turned down. It was before healthcare systems, Kaiser Permanente, Sutter Health, Dignity Health (in California) started using them, so, I guess I was ahead of my time.

Thank you Huntington’s Disease Foundation for the billboard; it raises HD awareness on another level.  I love this quote on their website:

“We Imagine a World   WITHOUT   Huntington’s disease”

The mission of the Huntington’s Disease Foundation (HDFI) is to serve as the trusted resource for the Huntington’s disease (HD) community by raising awareness, providing disease education, and funding research.

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.

 

We can never lose HOPE…………Therese