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 

A Love Story

A Precarious Life

The Kirkus reviewer of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s,  wrote the following regarding my book.           

“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.”

Many folks don’t know how rare Huntington’s disease is, $30,000 people in the U.S. have the disease, and the second fact unknown to many is that approximately 250,000 people live AT RISK.  So, what does that mean? It means those 250,000 had a parent with Huntington’s disease and they have a 50/50 chance of inheriting it. https://www.wehaveaface.org/    https://help4hd.org/           http://www.hdsa.org  

John and his three sisters, Lora, Marcia and Cindy were AT RISK since their mom had HD.  The five of us traveled a precarious road in the shadow of Huntington’s disease, not knowing when and who Huntington’s would attack.

 

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

To purchase Therese’s memoir, an inspirational story of hope and love, please go to   http://www.theresecrutchermarin.com 

 

Mindful

It’s the Little Things in Life

“That smell of coffee brewing in the morning, crawling into bed with freshly clean sheets, a warm hug from a loved one, that first, perfect bite of pasta…they always say it’s the little things in life that make a big difference and that has always proven true. You just have to see it and have the right vision. Open your eyes and witness all of the things around you that you have, be grateful and be thankful.

Appreciating what you have will make everything in your life seem that much bigger. People often say that when you wake up in the morning, say five things your grateful for to yourself. By doing this, it will make all of the bad things, obstacles, or difficulties in your life not seem as bad. Looking at the greatness in your life, no matter how small, can truly make you feel more upbeat, fulfilled, and happy.”

I found this article on  https://www.women.com/paigecatton/lists/number-grateful-quotes-that-prove-its-the-little-things-in-life   and it speaks to what I truly believe………being mindful and appreciating what you have in front of you at that moment.  I have so much to be thankful for; John, my kids, being able to take this trip to promote my book, my health, good friends and two kind sisters.  Don’t look forward or backward; look at what’s in front of you!

We can never lose HOPE……………….Therese

To purchase Therese’s inspiration story of HOPE and LOVE, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s go to  http://www.theresecrutchermarin.com

About Author

Book Discussion at Woody Guthrie Center

“A poignant remembrance of a love forged in crisis” Kirkus Review.

On Saturday, July 8, I will be holding a downloadbook discussion on my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s at the Woody Guthrie Center in Tulsa Oklahoma. It will be held in the WGC Theater at 2 p.m.

 http://woodyguthriecenter.org/events/book-discussion-watching-their-dance-three-sisters-a-genetic-disease-and-marrying-into-a-family-at-risk-for-huntingtons/  

Woody’s songs celebrate the beauty and bounty of America and seek the truth about our country and its people. He turned complex ideas about democracy, human rights, and economic equality into simple songs that all Americans could embrace. Woody spoke for those who carried a heavy burden or had come upon hard times. His words gave a voice to their struggle, and his songs gave them hope and strength.

The Woody Guthrie Center, home to the Woody Guthrie Archives, preserves his legacy and life story and communicates the social, political, and cultural values found in his vast body of work. The Center is a repository for Woody’s writings, art, and songs and an educational resource for teachers and students everywhere.

This is my first book discussion event and I’m looking forward to it. I have a short PowerPoint presentation to begin the conversation.

We can never lose HOPE…………..Therese 

Love

A Poignant Remembrance of a Love Forged in Crisis

From the Kirkus Review I received last April:

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a story more about the power of hope than the wages of Huntington’s—a pre-symptomatic test for the disease eventually hit the market, but John refused to take it. As he explained: “I’d rather live my life with the hope I don’t have the mutated gene than find out I do.”

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.”

John and Therese are donating 100% of the proceeds to Huntington’s Disease organizations around the world.  To purchase the book, please go to:   http://www.theresecrutchermarin.com 

We can never give up HOPE…………………………………..

 

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About Author

Therese’s Book Tour Continues in July

John and I have been traveling for about three weeks and boy have we had fun.  We’ve also seen some wild weather, i.e. thunderstorms. So, here is what we have scheduled for the month of July!

July 1-Madison Wisconsin.  HDSA Log Rolling Championship Fundraiser. The organizer of this event is Shana Verstegen who was a keynote (inspirational) speaker at the HDSA National Convention in June. She is an HD advocate and you can find her HD Workout Tips on http://www.hdsa.org  

 https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1258   

July 8- Tulsa Oklahoma. At the Woody Guthrie Center, at 2 p.m., I will be leading a discussion about my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://woodyguthriecenter.org/   

July 4-St. Louis, Missouri. John and I will celebrate the 4th of July with  Tom Nadelin and Claire, friend and former hospice coworker who I worked with for 10 years.

July 14-16-Okemah, Oklahoma. We’ll attend the Woody Guthrie Folk Festival to enjoy some awesome music, pay tribute to Woody and promote Watching Their Dance. I’ll be working side by side with the HDSA Oklahoma Chapter.  Okemah is where Woody was born.

http://www.woodyfest.com/

July 22-Hilliard, Ohio. HDSA Team Hope Walk.  Sign up below for the walk if you live in the area.  

https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189

Vacation time!  Woo Woo!

Therese’s book, Watching Their Dance: Three Sisters and Marrying into a Family At Risk for Huntington’s can be purchased on her Author Website:   http://www.theresecrutchermarin.com

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

Have a wonderful, fun filled summer!   Therese

Helping Others

Shana Verstegen and HD Workouts

Shana Verstegen is the former president of the HDSA Wisconsin chapter (2007-2013) and has served as a Huntington’s Disease Society of America national spokesperson since 2002. She received her bachelor’s degree in kinesiology and exercise science at the University of Wisconsin in 2002, and went on to earn the Log Rolling World Champion title in 2006, 2007, 2008, and 2012, and the Boom Run World Championship in 2008 and 2009.

Verstegen currently travels the country as a trainer for the American Council on Exercise – San Diego, TRX Training San Francisco, and Supreme Health and Fitness based in Madison, Wisconsin. She has helped raise public awareness about HD by making numerous television appearances on programs including the Tonight Show with Jay Leno, the Wayne Brady Show, Girls Behaving Badly (Oxygen Network), and a special ESPN feature about Huntington’s disease. In print she has been featured in venues including Oxygen, Women’s Physique World, Muscle & Fitness, Wisconsin Woman, and Newsweek magazine. While she says she has many things to be proud of, her work with HDSA in honor of her mother will always top that list. Her mother, Debby Martin, died from complications of Huntington’s disease in March 2013. Verstegen says that watching her mother lose her ability to move independently inspired her to live every day to the fullest with a focus on movement—from being the first female pole vaulter at the University of Wisconsin to winning a half dozen lumberjack titles. Verstegen is passionate about raising awareness toward finding a cure for Huntington’s disease, and fundraising to make that research and cure possible.

For more of Shana’s video’s on HD workouts go to:    http://hdsa.org/hd-workout-tips/    

Shana and her husband, Peter, are hosting three HDSA Team Hope Run/Walks in 2017.

Fox Valley August 13 https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1154   

Eau Claire August 19   https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1143  

Madison July 1  https://hdsa.donordrive.com/index.cfm?  fuseaction=donorDrive.event&eventID=1258

Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be purchased on:   http://www.theresecrutchermarin.com  

We can never lose HOPE………….Therese

 

 

Hope, Watching Their Dance

A Review Every Author Dreams of Receiving

KIRKUS REVIEW

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction.

To read the full Kirkus Review see:      https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/     

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, please visit:      http://theresecrutchermarin.com/     

We can never lose HOPE…………………Therese

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