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Huntington’s Disease

Huntington's Disease

James Patterson includes Huntington’s disease in his Book

Bruce Springsteen, my favorite artist, published his memoir Born to Run, in 2016. John knows I love memoirs so gave me the book for Christmas.  I didn’t start reading it until we started on my book tour in June.  It’s a big book, 510 pages, and Bruce shares every detail of his life along with his deep, intimate, emotions about everyone and everything.    http://www.rollingstone.com/music/features/bruce-springsteen-goes-deep-on-revelations-in-new-memoir-w443387  

I like to read two books at a time, so the other day we were at a flea market in Louisville Ohio and John picked up some books. When we got back to the RV, I looked through the pile and chose a Patterson book, Merry Christmas, Alex Cross.

I would bet most folks have read a James Patterson book; an author who created more enduring fictional characters than any other novelist writing today with his Alex Cross, Michael Bennett, Women’s Murder Club, Private, NYPD Red, Daniel X, Maximum Ride, and Middle School series.   http://www.jamespatterson.com/    

On the 33rd page of the book, about a 1/3 of the page down was this:  “Prior to the workplace lawsuit, he’d represented a California biotech company being sued by relatives of people who’d participated in a trial of a new Huntington’s disease drug and died shortly after treatment.”

You could have blown me over with a feather when I read it.  I got up and found John, showed him and we both looked at each and I said, “What are the chances of you picking up a book that has Huntington’s disease mentioned in it?”

I want to thank Mr. Patterson for including Huntington’s disease in his book because it creates awareness of the disease.  Maybe someone reading the book who knows nothing about the disease will look it up and make a donation to a Huntington’s disease organization somewhere in the world. That’s what I hope for anyway.   Watching the Dance Huntingtons Disease

We can never lose HOPE……………Therese 

To purchase Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease, and Marrying into a Family At Risk for Huntington’s, please go to her author website:   http://www.theresecrutchermarin.com 

Hope, Huntington's Disease

HDSA Team HOPE Walks

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease and their families. Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $12 million for the cause. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=857D7BD6-C299-258B-BC953D67026BF9CA  

John and I are halfway through my book tour and on our way to Hilliard Ohio for a Team Hope Walk this Saturday, June 22.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189  We will attend another Team Hope Walk in Ohio on August 5 in Dayton.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  We’re looking forward to visiting Ohio, a state we have never been to.

    

  Therese is donating 100% of the proceeds to her book to Huntington’s disease organizations around the world.  Please see her author website to purchase her nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.    http://www.theresecrutchermarin.com 

Huntington's Disease

Part 2-Interview with Dawn Landau-Blogger on the Huffington Post

In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

Therese Crutcher-Marin went into her marriage knowing that HD was a risk. In fact, she ran toward it, for love. At a time when there were no tests for HD, she embraced the man she loved and hoped for the best. Her new book looks at that decision, and it’s enormous impact.

I wanted to know more, and Therese agreed to be interviewed, for Huntington’s Disease Awareness Month. We both wanted to have this interview come out much earlier in May, to honor and bring awareness to the illness, but two busy schedules made that difficult. In the end, we both agreed that for those of us living with Huntington’s, EVERY month is Huntington’s Disease Awareness month! Purple and blue are the colors for HD. Wear them for someone you love, who is fighting this devastating disease.

Tell us how you first learned about Huntington’s Disease.

In 1978, John Marin, my college sweetheart, and I were graduating from college and planned to be married. His three older sisters, Lora, Marcia and Cindy, who had become my close friends, couldn’t explain to me why their mother had been in Napa State Hospital for 20 years. They asked their father but he would not tell them. The sisters contacted an aunt on their mother’s side of the family, whom they hadn’t seen in years, and on November 3, 1978, the Marin secret was revealed to us. Phyllis, their mother, had Huntington’s disease

Did your husband have a history of HD in his family, prior to that?

Their mother’s side of the family had a history of HD but their father knew nothing about it when he married Phyllis.

To be continued…………….

We can never lose HOPE…………………..Therese

Therese is the author of Watching Their Dance: Three Sisters, a Genetic  Disease and Marrying into a Family At Risk for Huntington’s.  It’s available on her author website:  http://www.theresecrutchermarin.com  

100% of the proceeds is being donated to Huntington’s disease organizations around the world.

 

Huntington's Disease

Interview with Dawn Landau-Blogger on the Huffington Post

In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

I don’t post on this blog enough; anyone who follows here, knows that. As I’ve noted in the past, fear keeps me away. If I hide my eyes, maybe it will go away? It, being Huntington’s Disease.

My family was blindsided by HD. My grandmother was a powerhouse and true icon in the world of Massachusetts’ realtors, for more than two decades. She was named top realtor in the state of Massachusetts, for the top real estate company in the state, for sixteen years! This, at a time when women were still making their way into this area of business. I grew up enormously proud of her, and hugely impacted by her. She helped raise me, and was the solid person in my life. She taught me to shake hands firmly, to make a mean pumpkin chiffon pie, and to be kind to others. I think we all both adored and feared her… she was a huge presence in our family and the community.

When she started tripping, while showing houses; walking strangely; forgetting things she’d always remembered, and a myriad of other strange changes, everyone assumed she’d developed a drinking problem. Family and friends urged me to look for drugs and alcohol, they all believed she was hiding, when I spent summers living with her, during college. I found nothing, and she grew worse.

When my grandmother was finally diagnosed with Huntington’s, our entire family went into denial. We didn’t know what it was. We were overwhelmed with the idea that anyone or anything could impact my grandmother in such a way, and none of us believed it would impact us too. We were an entire family of ostriches–– even after the hard reality of watching Grandma sink into herself, and eventually die of HD. We stayed paralyzed as my mother was diagnosed, but took more notice. By the time my forty-nine year old aunt died (my mother’s younger sister), after only a short nine months with rapid symptoms, we all were terrified. My mother’s illness was prolonged and horrible to watch. My younger sister is living with HD.

A few months ago Therese Crutcher-Marin read one of my posts here on the Huntington’s Chronicles, and contacted me. She has written a powerful new book, Watching Their Dance: Three Sisters, A Genetic Disease, and Marrying Into a Family At Risk For Huntington’s (buy here). The book looks at her husband’s family history with HD. It begins before there was testing–– when love was a leap of faith, and brings us to the present. Anyone dealing with this horrific disease may benefit from reading her book.

Interview to be continued on my next blog.

We can never lose HOPE……………..Therese

http://www.theresecrutchermarin.com   

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

Family, Huntington's Disease

May is Huntington’s Disease Awareness Month

Let’s Talk about Huntington’s Disease (HD) Because May is HD Awareness Month!

WHAT IS 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.

Most people do not know that Woody Guthrie, folk singer, died from HD.

Resources for Huntington’s disease:

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

Help 4 HD International   http://help4hd.org/

We Have A Face   https://www.wehaveaface.org/

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

 

Helping Others, Huntington's Disease

Donating Around the World

I have to share with you that my husband, John, will never read my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. He’s lived the story and it is just too painful to revisit, and I get it.

Back in 2010, when I said to him,”I want to honor your sisters in some way” he didn’t say much but he did listen to my idea of writing our story which included his three sisters.

A couple of years into writing the story, John came up with the idea of donating 100% of the books profits to Huntington’s Disease Society of America (HDSA) and then I took it a step further to donate the profits to a Huntington’s organization in the country where the book is purchased. John may not read the book but he has been my steadfast supporter over the seven years I’ve been writing and producing the book. Thank you dear friend, husband, father of my children and my biggest fan!

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Enjoy your day  Therese

Huntington's Disease

The International Huntington Association

It’s amazing how many Huntington’s Disease organizations exist outside the United States. The other day I discovered a website, the International Huntington’s Association. On the website you can find the HD organizations that exist in each country around the world.  For example, South America has 14 HD organizations.  I invite you to visit their website.

    http://huntington-disease.org/

I’ve listed the goals of The International Huntington’s Association and what excites me is that all the organizations around the world are working toward the same goal: Helping HD families and working toward a cure for Huntington’s disease.

PRIMARY GOALS OF THE INTERNATIONAL HUNTINGTON ASSOCIATION

– to promote international collaboration in the search for a cure for HD

– to maintain close liaison with the research scientists, who form the Research Group on Huntington’s Disease of the World Federation of Neurology.

– to develop and share information and resources among member countries, to avoid duplication of effort.

– to assist in organizing and developing new and existing national HD organisations.

– to cooperate with other voluntary health agencies and international health organisations.

– to publish and distribute an international newsletter to all members and to representatives in those countries where no HD group is not yet organised.

The Association is governed by an Executive Committee (president, vice president, secretary, treasurer, international development officer and two or more additional members) elected by delegates to the IHA conference and workshop convened every second year.

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Enjoy your day!  Therese

Huntington's Disease

Rare Disease Day Around the World

Today is RARE DISEASE DAY!

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.  http://www.rarediseaseday.org/article/what-is-a-rare-disease

HUNTINGTON’S DISEASE IS A RARE DISEASE. HD effects only approximately 30,000 in the United States and since that number is under 200,000, it’s considered a rare disease in the United States.

Here is some interesting facts on rare diseases.  There are approximately 7,000.

  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases affect children.

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Have a good day!  Therese

Hope, Huntington's Disease

Trey Gray-Dummer for Brooks & Dunn and Reba McEntire

I want to shout to the world my thanks to Trey Gray, another kind, giving individual who wrote a book jacket comment for Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s  Trey is a famous, talented drummer for Brooks & Dunn and Reba McEntire. He is also a Huntington’s disease advocate, who tested positive in 2003,

Here is his comment that will appear on the cover of my book:  “Tears, laughter, blessings and hope….an amazing story that will touch, and help, I pray, everyone who reads it”.

Trey has also let the world into his private life, more than one time, by participating in a 2013 documentary:  http://aliveandwellthefilm.com/ .  ALIVE & WELL is a powerful documentary film about the human condition, which follows seven resilient people coming to terms with the profound reality of living with the hereditary chronic illness known as Huntington’s Disease (HD). Subjects in the film range from a young woman hoping to start a family, to a mother taking care of her symptomatic 6 year-old son and ailing husband; the drummer of a major country music band, a former NBC News journalist turned HD-advocate, as well as a renowned scientist relentlessly searching for a cure. Far from giving us a hopeless glimpse into life with terminal illness, ALIVE & WELL reminds us all of our ability to persevere with strength, despite life’s most difficult challenges.

More information on Trey:  http://theboot.com/trey-gray-alive-and-well/

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Enjoy your day!  Therese