Browsing Tag

#huntingtonsdisease #WatchingTheirDance

The Marin Siblings

The Marin Women & Huntington’s Disease

May is Huntington’s Disease Awareness Month and I write today to honor Loralee (Marin) Harbin, the first of my three (3) sisters-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD

Loralee Marin

Lora, one of the kindest human beings I have ever met, blessed my life for 13 years.  I met Lora when she was 28 years old and I was a young 21 year old college student.  She was a beautiful blond, striking woman with a creamy complexion, twinkling eyes, and a welcoming smile. 

Her generosity and bubbly personality drew people to her; I always felt a light radiated from her.  By day, she was a secretary at an accounting firm in Sacramento; by night, a highly creative chef.

Lora, John and Keith in our backyard in 1985. Lora was living with us.

I loved Lora, as did John, and HD had a deep psychological effect on her; HD can affect people differently.  Lora became severely depressed and self-medicated with alcohol which lead to the end of her marriage, job and life.  Lora, the oldest of the four siblings, saw her mother struggle with HD, and, once learned she might inherit the disease, it sent her over the edge. 

In 1985, she was diagnosed with cirrhosis of the liver and prescribed coumadin, a blood tinning medication.  In September 1989, she took a bad fall, had a cerebral hemorrhage and died.  

John and I miss her everyday and wish we could have grown old together.  On July 15th, 2020 Lora would have celebrated her 72nd birthday.  #LetsTalkAboutHD

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

Grief, Love

Love and Loss

HDSA 2019 Convention

Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.

When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies.  I think it’s human nature not to spend time thinking about that event.

You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love?  I believe it is.   Article: If you love you will grieve

When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s.  The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/

I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease.  Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years.  John didn’t want to be genetically tested so I realized I could also lose him this way.

Loving John wasn’t really a choice.  I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.

To read about our love story while living in the shadow of Huntington’s disease. please see my author website:  https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

About Author

The Summer of 1968

Grandmother, Chris Crutcher

As the summer heat and long days fade into the colors of Fall, which is my favorite time of year, I find myself reminiscing of summers gone by; particularly the summer of 1968.  

This was my last summer in Shawnee Mission Kansas, where I grew up with grandparents, aunts, uncles, cousins close by, and it was as the beginning of a change I never imagined.  When the summer of 1968 ended, I was coming of age and it was the last time I thought and acted like a kid.  What-does-coming-of-age-mean

Crutcher Family 1966

In May 1969, my family moved to Riverside California and a new social culture was cast upon us. Gone were the carefree days of walking to the swimming pool with my sisters and neighborhood kids, catching fireflies at dusk, making up games, playing outside until my father stood on the back porch and whistled for us to return home and itching the chigger bites until they turned red.  

This is not an unusual story, we all become teenagers, priorities change and drama enters lives.  At age 13, in sunny California, I still went to the swimming pool with my girlfriends, but it was to get a tan, not get my hair wet and gossip.

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community of 7.1 million.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.  What is Huntington’s disease

The nonfiction book, Watching Their Dance is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose Hope…….

 

HDSA Fundraising events

HDSA Pacific Region

Author Therese Crutcher-Marin

The Pacific Region of the Huntington’s Disease Society of America (HDSA) has many events coming up in October.  Check them out below and attend, if you can, to help in the fight against Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder with NO CURE.  what is HD?

HD Freeze on Sept. 28th.   http://www.hdsa.org/freezehd

San Francisco Team Hope Walk & 5K Fun Run on Oct. 5th.  http://www.hdsa.org/thwsanfrancisco

San Diego Team Hope Walk on Oct. 6, 2019.  https://hdsa.donordrive.com/index.cfm

Monday Night Football, Tacos, & Beer to Bash HD on Oct. 21st in San Jose  https://app.donorview.com/jME5

Hounds 4 Huntington’s Dog Costume Walk on Oct. 26th in Petaluma  https://app.donorview.com/QV7R

Tuscan AZ Team Hope Walk on Oct. 26th  https://hdsa.donordrive.com/index.cfm

Orange County Team Hope Walk on Oct. 26th  https://hdsa.donordrive.com/index.cfm?

We Can Never Lose HOPE…………..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

About Author

More About Crossroads

Crossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck

In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever.  Living with an unknown gene status for Huntington’s disease (HD) petrified me and I questioned whether I had the strength and a love strong enough to live a life of uncertainty.  what-is-huntingtons-disease

I go stuck stuck, I felt tied up, for seven (7) months, difficult months with a broken heart.  I felt guilty turning away from John, because he MIGHT have Huntington’s disease.  But I was scared.

 

In the end, I took a leap of faith to be with John and even though his three (3) sisters died from Huntington’s disease, I have never regretted my decision.

We Can Never Lose HOPE….

Therese’s author website: https://www.theresecrutchermarin.com

HDSA 2019 Convention

Hope

CHDI Works Strictly On Huntington’s Disease

Author Therese Crutcher-Marin

Huntington’s disease folks may not know about the following organization.  They are another organization helping us move forward to find a therapy/cure.

Please watch the video from CHDI Foundation, Inc.  CHDI is a United States based non-profit biomedical foundation that aims to “rapidly discover and develop drugs that delay or slow the progression of Huntington’s disease“,[4] a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline.  https://chdifoundation.org/

Simon Noble, PhD, CHDI Director, Scientific Communications, states, “CHDI want to have as many families as possible watch it as our reason for producing these videos is to offer families hope.”

We Can Never Lose HOPE….

 

 

The Woody Guthrie Family

Happy Birthday Woody Guthrie

Last Sunday, Woody Guthrie would have been 107 years old.  Happy Birthday, Woody! 

Not everyone knows that Woody died from Huntington’s disease and his wife, Marjorie, organized the Committee to Combat Huntington Disease shortly after he died in 1967. After Marjorie’s death in 1983, the organization evolved into the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their family.  To learn more about Marjorie, visit: hdsa-pays-tribute-to-founder-marjorie-guthrie

I’m a Huntington’s Disease Advocate and volunteer for HDSA in the San Francisco Bay Area.

To learn about Woody’s achievements and contributions to the world, visit https://woodyguthrie.org/biography/biography1.htm

 

Therese at the 2018 HDSA Annual Convention in LA.

The profits from my nonfiction book are being donated to the HDSA to help in the fight against Huntington’s disease. Since I published in April 2017, I’ve gifted over $14,000.00.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be found online as an e-book and hard book.

My author website:   https://www.theresecrutchermarin.com

We Can Never Lose HOPE………….

HD Advocates

Trey Gray-Huntington’s Disease Philanthropist

Paul Erdman Band

I admire Trey Gray, the musician, father, Huntington’s disease (HD) advocate and a very kind, gentle soul.  He has done so much for the HD community and continues to do so through the Huntington’s Disease Foundation that Trey, Doug Michael and Anett Pappas founded together in 2015. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity. https://www.huntingtonsdiseasefoundation.org

Trey Gray is a professional drummer. He has played for Brooks ‘n Dunn, Ronnie Dunn, Reba McEntire, Faith Hill and Jewel, just to name a few.  In 2003, he was diagnosed with Huntington’s disease and his 3 children have a 50/50 chance of inheriting this disease too. His family members (mother and uncle) have both died of Huntington’s disease and he witnessed the pain and struggle as they went through each dreadful phase of HD. No person should have to go through that experience, which drove Trey into finding positive ways into turning his disease into something positive and inspirational. His new CD is available:  The Journey-cd-pre-order-ships-in-april.

I try and keep track of what Trey’s up to as a drummer and in his private life.  He shares his personal life on his Facebook wall https://www.facebook.com/trey.gray.564 and his mantra is “I’m grateful for today“.

                   

 

Trey wrote a book jacket comment that appears on the back on my nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

100% of the profits from the book are being donated to the nonprofit, Huntington’s Disease Society of America.  Author website: https://www.theresecrutchermarin.com

To date, John and I have donated $14,100.00 to HDSA which is the profit from the book since it was published.