Browsing Tag

#familyiseverything

Huntington's Disease

ABC News Special Report on Two Huntington’s Disease Families

On July 3rd, 2020, ABC News’ Linsey Davis follows two families grappling with the rare genetic disorder Huntington’s disease (HD), compared to ALS, Parkinson’s disease and Alzheimer’s disease all in one.  (if video didn’t transfer, click here to watch the video:  https://youtu.be/USwMplVl5vQ)

I was ecstatic when I saw the video on ABC. I don’t know how this came about but I bet the nonprofit, Huntington’s Disease Society of America (HDSA) had something to do with it!   

Thank you ABC News.  

The more awareness created about HD, especially by news organization like ABC, the more people will know about this horrific genetic disease with NO CURE.  What-is-Huntington’s Disease?

HDSA and many other nonprofits are being challenged due to COVID-19.  Most of HDSA fundraising events were changed to VIRTUAL and with so much uncertainty in our lives, donations are down.  To make a donation to HDSA and help in the fight against Huntington’s disease, click here HDSA-Make a Donation

Author Therese Crutcher-Marin Book Signing in Auburn CA

Thank you for reading my blog.  I’m an HD advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  100% of the profits are donated to HDSA. 

My author website:  https://theresecrutchermarin.com

 

We Can Never Lose HOPE….

Hope

Fighting Fear With HOPE

Author Therese Crutcher-Marin, HD Advocate

Last week I wrote how I almost didn’t follow my heart and marry the love of my life, John Marin, because I was scared, fearful that Huntington’s disease would attack him and slowly steal him away from me.  What-is-huntingtons-disease

At that time, I didn’t think I was strong enough or brave enough to live with an enormous uncertainty in my life forever or until there was a cure for Huntington’s disease.  Fear held me hostage and blinded me of the strength’s I possessed; I am resilient, persistent, empathetic, strong, caring, kind and irrevocably in love with John.

Articles on overcoming Fear:    jackcanfield.com/blog/overcoming-fear/

powerofpositivity.com/overcome-biggest-fears/

After I experienced an epiphany, a moment of sudden or great revelation that  changed me, I was lead back into his arms.  It was then that I decided to fight fear with HOPE

We Can Never Lose HOPE……..

 

 

 

 

Love

My Heart Was In The Lost and Found

 

Boz Scaggs is John and my artist, a talented musician popular in the 1970’s.  Whenever I hear a Boz song, I’m taken back to college and to my then boyfriend, John Marin, before the Marin secret was revealed. artist boz-scaggs biography

Boz Scaggs song, Look What You’ve Done To Me, breaks my heart when I hear it.  Click here to listen to it:  https://youtu.be/hWrbelCfMvc

As I look at the pictures of my life with John through the years, my heart skips a beat because I almost didn’t live that life.  When Huntington’s disease (HD) suddenly entered our life, it scared me to death and I questioned whether our LOVE would be enough? What is HD?

Out of fear, I left the relationship and my heart lived in the Lost and Found. For the next seven months, I did a lot of soul-searching and my emotions were all over the place.  I was young and didn’t have many life experiences to shore up my doubts.

John eventually found my heart in the Lost and Found just as I discovered LOVE would get us through the years and if he got sick, I’d be there to care for him.  That’s what you do for the people that you LOVE.

I’m grateful every day that I have had with John, the LOVE of my  life, who is healthy, and thankful for his negative test for the mutated Huntingtin gene.  Sometimes you just have to take a chance and listen to your heart.  What is Huntington’s disease

HDSA 2019 Convention

Article on goodtherapy-love         7-ways-to-deal-with-uncertainty/

We Can Never Lose HOPE…

To read for the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, go to my author website and sign up for my weekly blog. I’ll email you the 1st Chapter  https://theresecrutchermarin.com

About Author

The Empathy Gene

The word Empathy is the ability to imagine oneself in the condition of another; a vicarious participation in another’s emotions.

My mother holding me during my first Christmas

My mother, Cleo Rita (McKibben) Crutcher gifted me the Empathy Gene, a gene I was happy to receive. She was a kind hearted person who could empathize when others suffered losses, tragedies, helping however she could.

As a small child I saw compassion in my mothers daily activities.  One example I remember was when my sisters and I were sitting in the backseat of the car and we passed a car accident. As our car slowed down to pass the accident, I don’t know what exactly my mom saw, but she began to weep and began praying for the victims.

Articles on:     How to be more empathetic 

Psychologytoday.com/us/basics/empathy

I’m writing about the Empathy Gene, a positive gene to have because I write about the huntingtin gene, the mutated gene that causes Huntington’s disease (HD), the cruelest disease on the planet. HD symptoms are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously and there is NO CURE. What is HD?

I focus on the huntingtin gene because I’m a Huntington’s Disease Advocate, having lost my mother-in-law and three sisters-in-law to this horrific disease.

It feels good to write about the Empathy Gene that’s a good gene to have in your family.

Author Therese Crutcher-Marin

Thanks Mom for your gift of empathy. (Jan. 12, 1930-July 19, 2006)

We Can Never Lose HOPE…………

Therese Crutcher-Marin author website:  https://theresecrutchermarin.com

Fundraising

Raffle Prizes at HDSA Virtual Event on June 20th

Fran & Keith Marin, Event Coordinators

When you sign up for the 1st San Jose VIRTUAL Team Hope 10K Run & 5K Walk, you will be entered into 11 raffles.

Photo by alykat on Foter.com / CC BY

It’s FREE to join and donations are welcomed and appreciated!  hdsa.org/about/2020-san-jose-team-hope-run/walk

Pictures & value of the 11 raffle prizes.

$25

$116.00 value

$50.00 value

$25.00 value

$50.00 value

$200.00 value

two free meal items

$17.00 value

$65.00 value

         

Proceeds from the fundraiser, goes to the nonprofit, HDSA, to help in the fight against Huntington’s disease.  http://hdsa.org

We Can Never Lose HOPE…..

 

Family

Happy Mother’s Day to Mom’s Around the World

Many years ago I didn’t think I would be a mother.  With the threat of Huntington’s Disease and John’s unknown gene status, deciding whether to have our own biological children or adopting was a huge question in both of our minds.

After about a year of discussing and checking out adoption, John said to me, “Therese I will leave it up to you.  If you want to adopt or if you want us to have our own children, I’ll go with what you decide”.  Having the decision power given to me, didn’t make it any easier.

I made my decision after I talked with my Grandmother McKibben.  She shared her thoughts with these words that I had heard before.  “You never know what going to happen in life”.  Those were the words that had sent me back to John when I left the relationship because of Huntington’s disease.

I have been blessed in so many ways, and one is being a mother to our two terrific children, Vanessa and Keith. Everyday I give thanks that I made the decision to have our own kids.  In 2016, John tested negative for HD, for which we are grateful, and because he doesn’t carry the mutated HD gene, our kids do not have to live a life AT-RISK.   

We Can Never Lose HOPE……… 

 

HDSA, Huntington's Disease

What is Huntington’s Disease? A New Video

For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.

#HuntingtonsDisease #LetsTalkAboutHD #HDSAFamily #HDSA #Huntingtons #Disease #Brain #HD

 

Author Therese Crutcher-Marin, HD Advocate

To learn about Therese, visit her Author Website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE….

Volunteers

Volunteer Appreciation Week

National Volunteer Week is April 19-25 this year and it’s an opportunity to celebrate the impact of volunteer service and the power of volunteers to tackle society’s greatest challenge, to build stronger communities and be a force that transforms the world. 

I’m shouting out a Huge THANK YOU  to all the Huntington’s Disease Society of America (HDSA) volunteers across the country.  Thank you, Thank you, Thank you and Thank you.   

I’ve been a volunteer for the nonprofit, Huntington’s Disease Society of America, Inc. (HDSA) for the past four (4) years and currently I serve as the Chair for the San Francisco Bay Area Affiliate. To find out more about the affiliate, click here: San Francisco Bay Area Affiliate

HDSA is 90% volunteer based which is incredible with 55 Chapters/Affiliate across the U.S.  All the Chapters/Affiliates that are all managed by volunteers and each of them host a Team Hope Walk every year to raise dollars for research, to support 50 Centers of Excellence and other resources to improve the lives of everyone affected by HD and their families.  For more information on Huntington’s disease, click here:  http://hdsa.org

I’m blessed to work with awesome people who are passionate about helping in the fight against Huntington’s disease in the Bay Area.  These folks, volunteers, give unselfishly of their time and energy even though they have family members struggling with Huntington’s disease (HD) and who are they themselves at risk for the disease.

We Can Never Lose HOPE……………

      Therese at the 2018 HDSA Annual Convention in LA.

 

Grief

Always On My Mind

Willie Nelson’s song, Always On My Mind, has a very different meaning to me.  Since that November day in 1978, when Lora, Marcia and Cindy told John and I about their mother having Huntington’s disease (HD), HD has been on my mind every single day.  That day was a defining moment in my life, and I would conscientiously choose to live with the threat of HD.

For many years, fear and uncertainty lurked deep inside my psyche, and I tried to hide it, especially from the Marin siblings.

Before any of John’s sisters exhibited symptoms, I was watching, noting, praying, hoping HD would give the Marin’s siblings a pass.  That didn’t happen and even though these three (3) beautiful women are gone from my sight and John has tested negative, I wake up every morning still thinking about HD. Because HD has been burned into my mind, became part of my DNA, it did one good thing, it forced me to be MINDFUL every day and that is what kept me sane; appreciating all the good things in my life.

People have said to me, “Well, you volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA); that’s why you think about it”.  That’s not the reason; for 38 years, poignant grief lived in my heart and deep and poignant distress became my normal.  I watched something so horrific that it scarred my soul and the only way I can deal with it is to help HD families in my community.

 

We Can Never Lose HOPE…..

To know more about Therese and Huntington’s disease, Visit Therese’s Author Website .  https://www.theresecrutchermarin.com

Author Therese Crutcher-Marin

 

A Love Story, Watching Their Dance

In My Hands I Held My Dream

Even during this difficult time with the pandemic, I find joy and peace in reflecting upon the seven (7) year journey I conscientiously took, to write and publish a book, hoping it would soothe my soul.

Three years ago, I received at my home, the first shipment, 300, of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. It was a surreal feeling, holding a book in my hand.

This journey helped me fight through the complicated grief that I’d been stuck in.  As I wrote my story, and crafted the words on paper, it validated what John and I had lived through.

In April 2017, having healed, I could now talk about my three sisters-in-law, Lora, Marcia and Cindy who were struck down early in their lives by the insidious Huntington’s Disease, without crying.

Author Therese Crutcher-Marin Book Signing in Auburn CA

For the next several days, John and I had fun addressing approximately 30 books to mail to those who ordered a copy on my author website.  I also had two local book signing events to organize; April 29 and May 7, 2017.  https://www.theresecrutchermarin.com

It was a very exciting time for me as my dream came to fruition. To read Watching Their Dance book reviews, click here: https://theresecrutchermarin.com/goodreads-review/

 

     

The following is my personal tag line that I write in every book I sell.

We Can Never Lose Hope……….