Browsing Tag

#HDSA #huntingtonsdisease #WatchingTheirDance #cure4hdandjhd

HD Advocates, HD Awareness

Heightening Huntington’s Disease Awareness in the San Francisco Bay Area

The Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate is conducting a new outreach strategy in the greater San Jose area.   Huntington’s  disease (HD),  a rare,  fatal,  genetic brain  disorder,  is  not  known  by  most  people.  If  they  have  heard  of  HD,  they  don’t  know the  details  of  how  it  affects  a person  and  their  family  for  generations.  

HDSA Affiliate volunteers, Uma, David, Jay and myself are manning a table at the Campbell Farmers Market on Sundays from 9 am-1 pm spreading the word about the Cruelest Disease on the Planet; Huntington’s disease, and there is NO CURE.

41,000 American’s have the disease and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.  Of those 41,0000 symptomatic Americans, 16% are children with Juvenile Huntington’s disease.  

By our outreach efforts, we hope to reach Bay Area folks who are struggling with HD and inform them of the services available to their family.  

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

Please make a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) and  help us in the fight against HD.

The Marin Siblings

Through The Eyes Of An Artist

My daughter, Vanessa, is a gifted artist and a few years ago she gave me a wonderful gift.

My husband, John, has Huntington’s Disease (HD) in his family.  Since his mother had the disease, he and his three (3) sisters we at risk for this fatal, rare, genetic brain disorder that has NO CURE.  41,000 Americans have the disease and approximately 200,000 live at risk.

The four (4) siblings were very close, so as each sister developed HD symptoms we moved them close to support them in their HD journey.  Over 24 years, our children, Keith and Vanessa, witnessed the disease progression in their aunts, starting at very young ages.  Needless to say, it was difficult for all of us.

A few years ago, Vanessa painted a picture that soothed my soul and made the hole in my heart a little smaller.   The picture is a mural on the wall in my home office.  It depicts three figures, I see angels, traveling to heaven. 

Because Vanessa was emotionally affected by the aunts HD experience, I believe, she painted the mural for her own mental health and took another step to always remember them; she tattooed the angels on her back.

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

HD Awareness

Marin (Cahoon) Family Hit Hard by Huntington’s Disease

Phyllis Marin

As we celebrate Huntington’s Disease Awareness Month, I reflect on the Marin Family’s Huntington’s disease journey through the generations.  John’s mother side of the family, the Cahoon’s, battled Huntington’s disease (HD) and it’s overwhelming how many members of this family were affected.

HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s disease.  There is NO CURE and when a parent has HD, the children have a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.

The Cahoon family history of  Huntington’s disease dates back at least 4 generations. 

John’s great grandfather- Wilbert D. Cahoon

John’s grandfather-Charles Wilbur Cahoon

John’s mother-Phyllis Iva (Cahoon) Marin

Lora, Cindy, Marcia Marin

John’s three sisters: Lora, Marcia and Cindy

John tested in 2016 at the Center of Excellence at UC Davis Medical Center in Sacramento.  He tested anonymously and was negative for the mutated huntingtin gene.  His three sisters didn’t have children and with John negative results, Huntington’s disease is no longer in our family.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com 

 

 

 

 

 

 

 

 

 

 

HDSA Fundraising events

Virtual Trivia Night with Lagunitas, Bear Republic and HenHouse Beer

Please join us on April 25, 2021 for our upcoming Virtual Trivia Night with local  beers in Sonoma County; Lagunitas, Bear Republic and HenHouse Breweries. 

Signup here:  https://sanfrancisco.hdsa.org/trivianight

Open to San Francisco North bay residents/or anyone who will pick up their beer in Petaluma.

Must be 21 or older to participate.

$40 per person, each person will receive a total of 4 beers compliments of HenHouse, Bear Republic and Lagunitas.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from HenHouse, Lagunitas or Bear Republic in Sonoma County.  Lagunitas, Bear Republic and HenHouse.

Please pick up your beer at 15 Cleveland Lane, Petaluma on Saturday April 24 from 10:00 am to 6:00 pm, and Sunday April 25 from 10:00 am to 3:00 pm.

Call Vanessa Garrett at 530 906-3950 to arrange pick up.

Call Therese Crutcher-Marin at 530 906-8415 to arrange delivery. Delivery only by prearranged circumstances.

This event is a fundraiser for the nonprofit, Huntington’s Disease Society of America.

We Can Never Lose HOPE……….

 

Grief

The Grief Of A Nation-The Loss of Our Loved Ones

A year ago, like all Americans, we were living a normal life, working, going to the gym, picking up our children at school, going on vacations.  During this time my 90-year-old father, James Keith Crutcher, was showing signs of dementia, forgetfulness, an unsteady gait, and, unbeknownst to my sister and me, taking many falls in his home.

Thus began the rapid decline of my father’s health and the anticipatory grief that was growing in my heart.  At the same time, COVID-19 was spreading like wild fire, the American people were quarantined and the number of Americans dying increased daily.

This week, America reached 500,000 deaths, and counting, from the Coronavirus, and we are a nation in deep grief. I mourn the loss of my father and at the same time, the loss of 500,000 American’s.

Last Monday, the United States of America took time to recognize the loss of our loved ones for which I’m  grateful.

My father died on December 13, 2020 after taking a bad fall and breaking his neck.  Unfortunately, he had to have surgery, or be paralyzed from the neck down.  Because of the pandemic, my family couldn’t be with my dad when he was in the hospital.  We got him home with hospice care and he died three days later.

I pray with time, our nation can recover from all we have lost and heal from this devastating COVID-19 pandemic.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s Disease Advocate, the Chair for the Huntington’s Disease Society of American San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

 

 

 

HD Advocates

Trey Gray An Inspiration

The following Article was written March 2020 before the Pandemic.

Author Therese Crutcher-Marin

“Trey Gray is on tour right now with some of the biggest names in country music. His personal struggles with a debilitating disease are also taking up a lot of his time.

He suffers from Huntington’s Disease . He was diagnosed back in 2003. From the onset of symptoms, the life expectancy of Huntington’s is about 10 to 15 years. It’s been 17 years since Gray started having symptoms. It’s why Gray is enjoying doing what he loves and spreading awareness about his challenges.”
To watch Trey’s video, Beating the Odds of Huntington’s Disease, click here:  https://youtu.be/aJlLD-EvT1Y

Trey has four (4) children who are at risk for the mutated huntingtin gene.  He was instrumental in creating the Huntington’s Disease Foundation  another Huntington’s disease organization raising awareness, supporting families, funding research and finding a cure.

Trey wrote a blurb after reading my book, Watching Their Dance, and it appears on the back cover above Kate Miner’s blurb.  

We Can Never Lose HOPE….

I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger.  Visit my  Author/HD Advocate Website

Please donate to the nonprofit, Huntington’sDisease Society of America, and help us eradicate this incurable brain disorder.

 

 

Love, Therese-Author

A Reoccurring Dream

HDSA 2019 Convention

Lora, Cindy and Marcia Marin

February is the month of love – a time for Valentine’s Day and remembering love – emphasizing the importance of love in our lives.     

I want to share a dream I’ve had on and off over the years.  A little information is needed to understand why I have this dream. John, my husband and his three sisters, were at risk for Huntington’s disease (HD); a fatal, rare, genetic brain disorder with NO CURE.  More About HD  

It seems I have the dream when I’ve had stressful times. It’s weird that I remember it because usually when I wake up and remember a dream, it fades through the day.

The dream I’m going to describe has been confusing but I now know why I’m having it; at least I think I know.   

In the dream, I’m a young woman, about 22-year old, walking along Market Street in San Francisco. It’s foggy, of course, and out of the fog walks John, who is very old, holding the hand of a little girl. I stop, stare at him and as he walks by, he smiles at me.  My hand goes over my mouth as I realize John is healthy, has no Huntington’s disease symptoms.

Over the years, I’ve pondered about this reoccurring dream and I’ve come to believe the dream validates my decision to marry John despite his unknown gene status for HD. Taking the biggest gamble of my life, following my heart, while being scared to death, was the right decision.

Article on Why Do We Dream-A sleep expert answers 5 questions

The Conversation.com/why-do-we-dream

We Can Never Lose HOPE………

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………..