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HD Awareness

Memoir Heightens Huntington’s Disease Awareness

HDSA Northern California Chapter Convention/Education Day

I wrote and published the book, Watching Their Dance, for several reasons and the first reason was to heighten Awareness of Huntington’s Disease.

The book is a tool for others to use to create/heighten Huntington’s disease awareness. The story reads like a novel and appeals to a large audience, especially readers who enjoy a love story with a difficult challenge.  (It’s John and my love story while living in the shadow of HD).

To successfully fundraise for a rare, fatal, hereditary brain disorder, with no cure, like Huntington’s disease, creating awareness is vital.  How can someone be persuaded to give, if they know nothing about the cause (disease)?

So, I ask the many HD community folks who purchased the book, many thanks, to pass it on to someone who knows little about the disease.   What is Huntington’s disease?

I found this interesting article on 15 Way to Skyrocket Awareness for a Cause, and I’m going to implement a couple of the suggestions into my outreach plan.   https://www.youcaring.com/blog/2017/how-to-raise-awareness-for-a-cause

1. Organize educational events

2.  Host fundraising events      

3.  Set a world record                           

4. Be picture perfect

5. Host a video contest

6. Like and comment to win

Branding Your Cause

7. Be consistent

8. Design and distribute swag

9. Boost social media awareness

Content 

10. Produce content others find valuable        

11. Make informational pamphlets

12. Write a press release

Issue Challenges 

13. Make a viral challenge video

14. Challenge your coworkers

15. Take on a challenge

May is Huntington’s Disease Awareness Month

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

In December, Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from 2017 book sales.

#LetsTalkAboutHD   #WeCanNeverLoseHOPE  #WatchingTheirDance  #HDSAFamily

Photo by symphony of love on Foter.com / CC BY-SA

 

 

 

 

 

 

HD Awareness

“House” TV Series & Huntington’s Disease

   MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc.  House is one such program, and there are others.  I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars.   https://en.wikipedia.org/wiki/House_(TV_series) 

#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate.      http://www.huntingtonsdiseasefoundation.org/ 

#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug.  https://www.wehaveaface.org/ 

#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial.  http://www.hdsa.org 

I’m really glad Huntington’s disease has come out of the closet; it’s another neurodegenerative disease like Alzheimers, Parkinson’s, ALS but there seems to have been a stigma attached to the disease.  http://www.neurodegenerationresearch.eu/about/what/ 

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 Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

#LetsTalkAboutHD

#HDAwarenessMonth 

HD Awareness

Let’s Talk About Huntington’s Disease (HD)

       May is Huntington’s Disease Awareness Month    

                        So, Let’s Talk About HD!  

What is Huntington’s Disease

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. http://hdsa.org/what-is-hd/  

I have chosen to support Huntington’s Disease Society of America (HDSA) because I believe in their Mission statement:  “To improve the lives of everyone affected by Huntington’s disease.” 

Their Mission statement is close to my heart because my three sisters-in-law had Huntington’s disease and John and I cared for them the best we could.  Our goal was to help them have the highest quality of life as possible stay independent for as long as possible.  During that time, from 1984-2008, it was very difficult for John and myself because there were no support groups, HD clinics, or knowledgeable neurologists in the Sacramento area.   I don’t want anyone to feel as alone as we did.  

“A world free of Huntington’s disease”; HDSA’s Vision statement is what I hope to see in my lifetime. 

So, I volunteer my time to the HDSA Northern California Chapter; I’m on the Board of Directors and will president next year.   http://www.hdsa.org 

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………………..

 

 

 

HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

Huntington’s Disease Society of America http://www.hdsa.org

Help4HD International  https://help4hd.org/

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

Huntington’s Disease Foundation  http://www.huntingtonsdiseasefoundation.org/ 

WeHaveAFace  https://www.wehaveaface.org/

  

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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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About Author, HD Awareness

Writing for a HD Cure

People write books for many reasons.  In my instance, I wrote Watching Their Dance with several goals in mind. when book sales benefit a cause

Recognizing the goals or reasons for writing a story, I believe, will assist a writer with marketing their book, because it helps  identify their audience.

My goals/reasons for writing, Watching Their Dance:

  1. Create a tool to heighten awareness of Huntington’s disease
  2. Communicate the truth of what HD families go through for generations when HD is in their family
  3. Give the Huntington’s disease community around the world a way to generate money for their HD organization, i.e. HDSA, Huntington’s Society of Canada, Huntington’s Disease Association, etc., by purchasing a copy and telling others about it
  4. Donate the profit from book sales to Huntington’s Disease Society of America (HDSA)
  5. Contribute to the fight against HD monetarily that brings us closer to a cure or therapy  
  6. On a personal level, I wanted to heal from the loss of my 3 sisters-in-law, who had HD, and writing the story was therapeutic
  7. Honor Lora, Marcia and Cindy, and create a legacy
  8. Ultimately, I wanted to help find a cure for the cruelest disease on the planet

After setting my goals, the Huntington’s disease community around the world became one of my audiences. I have others that I will share in another blog.

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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

 

 

HD Awareness

Hero’s/Advocates In the Huntington’s Disease Community

There are many Huntington’s disease hero’s/advocates among us, some celebrities, some like myself, every day folks living their lives as fully as possible.  The pictures I shared on my blog are some of these hero’s/advocates: Musician Kate Miner, Woody & Marjorie Guthrie, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler,  Hockey player Jake Dowell, Movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Blogger Dawn Quyle Landau and Drummer Trey Grey. (I’m sure there are others that belong on the list)

First and foremost, my sisters-in-law, Lora, Marcia and Cindy are my hero’s; caring for them was a privilege and an honor to walk beside them as they struggled with HD. 

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://www.hdsa.org  

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.

 

 

 

 

HD Awareness

Dawn Doster & Therese Crutcher-Marin’s HD Interview

Continued from Nov. 13 blog. Dawn Doster and myself heightening HD Awareness in an interview last May during Huntington’s Disease Awareness Month.

“Despite getting pregnant and married at a very early age, Dawn Doster made an achievement-strewn life for herself and her daughter after marrying her second husband (who, as we learned yesterday, adopted Doster’s two-year-old daughter Yvette). She earned a bachelor’s degree and an MBA, was a teacher and then the business operations chief for a federal agency. Despite the fact that her now-grown daughter has tested positive for Huntington’s disease, and her grandson is at risk for it, she says, “I am blessed to have a wonderful family and a good life.”

For Therese Cructher-Marin — whose memoir, Watching Their Dance, about “marrying into” a family with Huntington’s disease, is available at amazon.com — she takes courage from her family. Having lost her mother-in-law and sisters-in-law to the disease, which her husband miraculously doesn’t have, she writes eloquently about their struggle: “I admired them from the day we met for their ability to be positive, loyal, fun-loving, forgiving and kind. What I learned from them could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago” — when she met the family of the man she’d marry — “I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.”   http://www.theresecrutchermarin.com  

As we reported yesterday, she’s scheduled to become president of the Huntington’s Disease Society of America’s Northern California chapter next year, a post formerly held by her friend Doster.

“My dream,” Crutcher-Marin said in our lunch interview, “is to get people with neurodegenerative diseases together and form an alliance. Because symptoms may take a long time to show up, we really have no idea how many people may eventually develop Huntington’s (200,000 may be at risk). It’s often true of these other diseases as well. We need to share information and stories.”

If the stories are similar to those in her book, they’re emotional, horrifying yet somehow hopeful.”

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.

 

HD Awareness

Heightening Huntington’s Disease Awareness is Important Everyday

I’m posting this Interview with Ed Goldman of the Sacramento Business Journal again, because I think it has value to the HD community. It appeared in May 2017-– Huntington’s Disease Awareness Month. http://www.bizjournals.com/sacramento

“The headline on a news release about one of this country’s lesser-known charitable causes makes its case dramatically but authentically: “Imagine having Alzheimer’s, ALS and Parkinson’s at the Same Time.”

That can be the case for people who have Huntington’s disease, which many of us first heard about when it was listed as folk legend Woody Guthrie’s cause of death in 1967. As with ALS — amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease — Huntington’s, a progressive genetic neurological disorder, can cause muscles to shrivel. And all of this can be accompanied by severe memory loss (as with Alzheimer’s) and, like Parkinson’s, extreme nerve impairment.

It’s a living hell for those who suffer from it and a living nightmare for those who know they’ve inherited the gene: it may be only a matter of time before symptoms appear. Around 30,000 people have the disease, though another 200,000 are at risk, according to the women you’re about to meet, whose lives have been affected by the disease though they themselves are not patients.

One is Sacramento resident Dawn Doster, former president of the Huntington’s Disease Society of America’s Northern California chapter.

The other is Auburn resident Therese Crutcher-Marin, who is likely to become the nonprofit’s president in 2018. She’s also the author of Watching Their Dance, a frank and moving memoir subtitled, Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s  http://www.theresecrutchermarin.com   

If our get-together had a contemporaneous news angle, it was for the women to announce the group’s annual conference at the UC Davis Medical Center on May 20, as well as its Ninth Annual Team Hope Walk Sacramento, a benefit for families, such as their own, that have been impacted by Huntington’s. That family event, in Land Park, takes place on June 24. Information on both events is online at http://northernca.hdsa.org/.

Doster, whose accent is a holdover from being born and raised in Lizella, Georgia, about 11 miles from Macon, though she’s been in Sacramento for more than three decades. Her grown daughter, Yvette, has symptoms of the disease, whose gene had been passed along by her father, to whom Doster was married for a brief time. (He died of Huntington’s in his late 50s.) She’s been married to her second husband, Ron Doster, for 47 years. Ron adopted Yvette when she was two years old. She wasn’t told of her being at risk until she was 16. Married, she has a son, Haydn, who’s also at risk.”

We can never lose HOPE…………….Therese

HD Awareness

Chris Furbee-Director of “Huntington’s Dance” Film

Chris Furbee will be honored at the San Francisco HDSA Team Hope Walk, October 21, 2017, for his dedication to heighten awareness for Huntington’s Disease. To sign up go to: SF Walk

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. 

When Chris Furbee picked up a camera to document his mother’s struggle with Huntington’s Disease, he used it as a tool to understand not only her struggle, but his own as well. Eighteen years later, with the help of his editor, Herbert Bennett, he crafted Huntington’s Dance, the kind of naked and honest film that gives all of us insight into coping with long-term illness. The film was produced in 2014 and an official Selection of the Slamdance Film Festival 2014 in Park City.

We can never lose HOPE………..Therese

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