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#HDSA #huntingtonsdisease #WatchingTheirDance #cure4hdandjhd

The Non Fiction Book

Give a Book for Christmas That Supports a Cause

Author Therese Crutcher-Marin

Merry Christmas and Good Tidings to you and your family.

Books are always a great gift especially when it supports a cause.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s Disease (HD), is John and my love story while living in the shadow of Huntington’s disease. Book Reviews  

Lora, Cindy, Marcia Marin

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimer’s and Parkinson synonymously and has NO CURE100% of the proceeds from the sale of the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against HD.  

The incentive to write my story was to honor my three sisters-in-law, Lora, Marcia and Cindy, who lost their lives to HD complications. Furthermore, the book heightens HD awareness, and, currently, 41,000 Americans live with the disease and over 200,000 live at risk. 

With that said, I ask for your Help in the Fight Against Huntington’s Disease by purchasing my nonfiction Watching the Dance Huntingtons Diseasebook.  Amazon-Watching-Their-Dance      BarnesandNoble-Watching-Their-Dance    thriftbooks.com   Author website: e-file $6.99purchase-book

I believe the world needs to hear HD families stories.

We Can Never Lose HOPE…………

 

Blogging

Why I Blog

Author Therese Crutcher-Marin

I started writing a nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, in 2010. The experts in the book world suggested developing a website, mine is WordPress, before a book is published to have a platform to promote it on.               

So, I started building my Author Website, https://theresecrutchermarin.com in 2014 and my first blog was published on May 1, 2015.

Today, I write a blog twice a week and 80% of them are centered around Huntington’s Disease and my experience, heartache, tough decisions, stress, over 36 years, with three sisters-in-law dying from the disease.  What is Huntington’s Disease 

My goal in writing a blog is to disseminate information to Huntington’s disease (HD) communities in the United States.  I vowed to myself, that through the blog, FaceBook, Twitter and LinkedIn, I would share resources so no one had to feel alone.  When Lora, Marcia and Cindy were struggling with HD the resources were scarce and John and I felt very alone.

The nonprofit, Huntington’s Disease Society of America (HDSA), has a blog on their website that is published weekly, reported by Dr. Leora Fox, PhD, Senior Manager, Research & Mission Programs.   https://hdsa.org/blog/

Below is the header on my author website:

We Can Never Lose HOPE……………

HD Research

HSG-Clinical Research Network Focused Exclusively on HD

Since I’m strongly connected to the nonprofit, Huntington’s Disease Society of America (HDSA), I did not know much about The Huntington Study Group (HSG) which is a clinical research network focused exclusively on Huntington’s Disease. https://huntingtonstudygroup.org/

Despite the COVID-19 pandemic, scientists, clinicians and industry experts are still meeting (albeit online) to discuss the latest research in HD drug discovery and the findings from HD clinical trials to continue to push HD research forward.

On October 29th, the HSG began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the recent developments in HD drug discovery. huntingtonstudygroup.org/about/our-annual-meeting/

To read about the HSG annual conference in plain language visit:         

https://en.hdbuzz.net/295

Author Therese Crutcher-Marin

 

We Can Never Lose HOPE………..

A Love Story

Love Letters

HDSA 2019 Convention

John and I have sold our home in Auburn, CA, that we’ve lived in for 31 years, to start a new chapter of our lives.  We decided to move closer to our children, we want to move before we can’t move, as we will be first time grandparents in February 2021.  

Purging, as I call it, is daunting after living that long in one home.  So, as I combed through each closet, drawer and way back in a cabinet I found LOVE LETTERS John wrote to me after I walked away from the relationship during our last year in college.  The letters were endearing and brought tears to my eyes as John expressed his love for me.  I’d left because of the discovery that his mother had had Huntington’s disease (HD) and John had a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.   What is HD?       

Our love has endured, despite the anxiety of living at-risk for HD, difficult choices and the overwhelming grief we experienced at the loss of my three sisters-in-law from HD complications. Article on For Better or For Worse-Tragedies-in-Relationships 

Article on If You Love You Will Grieve

On September 27th, John and I celebrated our 40th wedding anniversary.  We count our blessings every day, embracing our love and respect for each other. 

 

 

 

 

 

 

We Can Never Lose HOPE…..

HDSA Fundraising events

Kate Miner-HD Advocate, Singer, Musician and Actress

Author Therese Crutcher-Marin

Kate’s mother and two sisters tested positive in 2015 for the mutated huntingtin gene. Kate tested negative. Her sister, Jenne, is on the Huntington’s Disease Society of America (HDSA) Board of Trustee.  jenne-coler-dark-interview

In 2017, I conducted an interview with Kate Miner. One question I asked:

Tell us about your involvement in Freeze HD and other ways you are trying to educate people about the disease.  

Kate:  We decided to host a fundraiser as a sort of coming out party to our family and friends many of whom, like us, had no idea what HD was before it affected our family. We rented out a fun music venue in Echo Park called The Bootleg Theater and proceeded to raise over 200k. The event brought out big names like Academy Award winner Annette Bening and an array of television stars.  Kate Miner FB page

THE 6TH ANNUAL FREEZE HD GOES VIRTUAL & FREE!

Join hosts

& Kate Miner on Sept 26 at the Virtual 6th Annual Freeze HD! REGISTER TODAY: HDSA.ORG/FREEZEHD

                         

In 2019 the Freeze HD raised over $420,000.00.  That is amazing!

We Can Never Lose HOPE…

Huntington's Disease

The Magnolia Journal Talks About Risk

Author Therese Crutcher-Marin

Over the past few years, I’ve seen Huntington’s disease  (HD) featured on multiple television shows, i.e. House, ER, Call the Midwife, and on local and national news channels.

My latest discovery of an article on HD was in Magnolia Journal, inspiration for life and home. A friend who subscribes to the magazine told me about the article so I bought a copy. The theme for the summer edition is, A look at Risk….choosing courage in the face of the unknown. This statement rings true for those living at risk for HD. Info on Magnolia Journal  

After doing a little digging, I discovered Hunter Ward, the young man in the article that is at risk for HD, works at the magazine. I applaud he and his wife for sharing their story because it is not always easy.

To show my gratitude for including the story, I wrote a thank you letter to Chip and Joanna Gaines, HGTV show Fixer Upper, who produce the magazine,  and sent them a copy of my book, Watching Their Dance, which is very similar to Maddie and Hunter Ward story.

For more info on Chip & Joanna:  HGTV Fixer Upper Show

We Can Never Lose HOPE….

 

Thankful

Growing Old Is A Gift

Most people wouldn’t agree that it’s a gift to grow old.  If you have Huntington’s disease (HD) in your family, you probably would agree.  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  For more information go to:  http://hdsa.org or visit my author website at:  https://theresecrutchermarin.com 

Unfortunately, HD is in John’s family and his three (3) sisters inherited the mutated huntingtin gene and are gone from our sight.  Each year on the birthday of Lora, Marcia and Cindy, John and I always talk about what age they would be and what they would look like.  Lora died at age 41, Marcia at 49, Cindy at 54 and their mother, Phyllis, at 48.

Lora, Cindy, Marcia Marin

Through the years, our hearts have carried the loss of the sisters and is felt more intensely during the holidays and special occasions because we still want them to be with us.  We can never celebrate a birthday, Christmas, Thanksgiving dinner or just hang out. We miss even something so simple as picking up the phone to talk with them.  What I wouldn’t do to see these kindhearted, nonjudgemental women, who taught me about mindfulness, forgiveness, and unconditional love.

We Can Never Lose HOPE…………

Author Therese Crutcher-Marin

 

 

Love, The Marin Siblings

A Letter to the Mother-in-Law I Never Knew

Phyllis Iva (Cahoon) Marin, the mother-in-law I never knew, has been on my mind through the years.  I wish I’d known her and I feel cheated not to have had her in my life. I’ve written a letter to her to express my feelings.

Dear Phyllis, 

My name is Therese Marie Crutcher-Marin and I married your kind-hearted son, John Anthony Marin and we will celebrate 40 years of marriage on Sept. 27th. 

I want to thank you for giving him to the world, a world where I was able to find him.  He is the love of my life and I’m ashamed to say I almost didn’t marry him, out of fear, because of the threat of Huntington’s disease.  If John had inherited the mutated huntingtin gene and became ill, I would have taken care of him, since that’s what I believe you do for the people you love.    

Your three daughters, Lora, Marcia and Cindy, were also benevolent, compassionate women and you would have been proud of the kind of people they became as adults.  I loved these women like they were my own sisters and I miss them everyday.  Unfortunately, Huntington’s disease stole them away from us, but rest assured, John and I took care of them through their long journey’s with this horrific disease.  

I find comfort knowing that the four of you are together in heaven, as it should be, a mother with her children, and I pray your souls find peace spending eternity together with our loving Father. 

I’m looking forward to meeting you one day.

Your devoted daughter-in-law, Therese

 

We Can Never Lose HOPE….

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

Author Therese Crutcher-Marin

 

HDSA Fundraising events

San Jose Virtual Team Hope 10K Run and 5K Walk for Huntington’s Disease

Please join the first San Jose VIRTUAL Team Hope 10K Run & 5K Walk on June 20th at 10 a.m. (PST), a fundraiser for the nonprofit, Huntington’s Disease Society of America (HDSA).

The Coronavirus has impacted our daily lives and interfered with many fundraising activities, but the Huntington’s disease community is resilient and we carry on, changing our events so we can continue to provide local resources to help HD families in the San Francisco Bay Area. 

The VIRTUAL Run and Walk is FREE to Join.  Donations are very appreciated.

To sign up, visit: HDSA San Jose Virtual Fundraiser

We Can Never Lose HOPE….     #LetsTalkAboutHD

Huntington's Disease

Huntington’s Disease & COVID-19 Pandemic Resources

HD & COVID-19 PANDEMIC RESOURCES

Please click on Title, above, to find virtual Huntington’s disease resources and the video,  HDSA’s Here’s The Deal” tackles important topics to help you navigate through your journey with Huntington’s disease (HD). In this episode Jennifer Simpson, LCSW sits down with Dr. Victor Sung & Dr. Arik Johnson to discuss COVID-19 & HD.

                                                 

LOCAL HDSA EVENTS

Due to social distancing requirements, all of HDSA’s in-person events and fundraisers through April 30th are postponed. Additionally, many May events are also being rescheduled. We encourage you to visit the event calendar at HDSA.org for the most up-to-date information about events in your community.

Importantly, HDSA’s Team Hope Walk Program is going virtual!   

Visit HDSA’s Event Calendars

We Can Never Lose HOPE……   

Author Therese Crutcher-Marin

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