Family

Why Did I Start the HDSA San Francisco Bay Area Affiliate?

Many people have asked me why I started the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate , with the help of many Huntington’s Disease (HD) advocates, when I don’t live there?  Facebook Page

I believe the San Francisco Bay Area, with 7 million people, deserved to have a HDSA Chapter/Affiliate to support the local Huntington’s disease families.   

I also had another reason in mind.  Over the past three years, I’ve been bugging John to move to the San Francisco Bay Area to be closer to our children. I knew one day John would relent and he did last summer, when it was a brutally hot summer in Auburn CA.

Keith and Fran had their first child four months ago and will soon be in a home in Novato CA to grow their family.  Vanessa and Scott bought a home in Petaluma, north San Francisco, and love it there.

So, we sold our house in Auburn CA and are building a 1200 sq. ft. home on Vanessa and Scott’s property in Petaluma and are temporarily living in our cabin in Lake Tahoe while it is being built.

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a HD, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

 

Visit my website at:  https://theresecrutchermarin.com

 

 

 

 

Taking Care of Yourself

Why Is Mental Health So Hard to Discuss?

Author Therese Crutcher-Marin

There is a lot of talk in the news these days about mental health or mental illnesses. Naomi Osaka, tennis player, was in the news recently withdrawing from the French Open, citing concerns for her mental health.                                                         

When families are struggling with Huntington’s disease and caring for a loved one, it puts enormous strain on the caregiver and family members and grief becomes an issue and can lead to mental illness.  The nonprofit, Huntington’s Disease Society of America (HDSA) has a FREE Telehealth Program, powered by Amwell.  The program makes it easy for folks to talk to mental health therapists from the comfort of their home.

Healthcare professionals and myself believe the brain is an organ in our body and when it becomes ill, it needs to be addressed.  We need to fight the stigma of mental illness.  Over 24 years, I watched my three sisters-in-law struggle with Huntington’s disease , and I carried anticipatory grief in my heart which lead to complicated grief after their death.  I saw a psychologist in my community, for 10 years who helped me deal with the fear and sadness I carried in my heart.       

My advice to to not be afraid to ask for help.

We Can Never Lose HOPE………

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.

 

 

Family, Mindful

Marlena Keeps Me Present and Mindful

John and I have been helping Keith and Fran, with our three and a half month old granddaughter, Marlena, since Fran went back to work and still works remotely.

Last week as I sat on the couch holding her, amazed at her progress in just three months, I reminded myself to stay present, relaxing in the beauty of the moment. I consciously did not let my mind wander, like it usually does, but kept my focus on Marlena.  As I focused my awareness on the present moment, my breathe slowed, my shoulders relaxed and I felt Marlena’s body relax against me.  I breathed in her baby smell, kissed her cheek and squeezed her a little tighter, acknowledging the many blessings I have presently right in front of me.   

One of the best tools to practice staying present is mindfulness.  Mindfulness is essentially an accepting, open, non-judgmental and curious focus on one’s emotional, cognitive and sensory experience in the present moment. Simply put, mindfulness is present moment self-awareness.

It takes some concentration and the rewards you reap are wonderful.

We Can Never Lose HOPE….

I’m a Huntington’s Disease(HD) Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. My Author/HD Advocate Website

Author Therese Crutcher-Marin

Please make a donation to the nonprofit, Huntington’s Disease Society of America.  You can help us in the fight to eradicate this horrific disease so no one has to suffer anymore.  Donate here.

  

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.

 

2017 Book Tour

A Book Tour That Turned Into An Inspirational Journey

Four (4) years to the day, John and I took off on a book tour, in our RV, to promote the nonfiction book I had just published,Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Before we headed East on I80, I had mapped out nine (9) Huntington’s Disease Society of America (HDSA) Team Hope Walks, in the Midwest, that we could attend over a period of three (3) months.  I had talked to the coordinator of each Walk, to make sure it was ok, and was welcomed with open arms. When the walk was concluded, I calculated the proceeds from books sold that day, and wrote a check to the HDSA Chapter/Affiliate hosting the event.

After each Walk, my heart was filled with hope and love, and I was inspired by the strength I witnessed in the HD families I had the honor to meet.

In every book I sold, I wrote, We Can Never Lose HOPE….

Visit my Author/HD Advocate Website

 

 

Thankful

My Grateful Heart

To say “I’m grateful” is an understatement, and quite frankly, there isn’t a word that truly expresses the thankfulness I carry in my heart everyday.

Why am I appreciative?  In 2016, my husband, John, decided he wanted to to be genetic tested to find out his gene status for Huntington’s disease (HD).  Since HD is genetic, a negative test result meant he could not pass the mutated gene on to his children.

Our daughter Vanessa Garrett

Fast forward to 2021.  In February, our son, Keith, and his wife, Fran welcomed their first child, our first grandchild, into a family FREE of HD.

 I volunteer for the nonprofit, HDSA, and their Vision  Statement is, “A World FREE of HD“.

For 38 years, I worried about John and our children, praying they would be spared.  Now, I sleep soundly at night and thank the Higher Power for this gift.

Not every HD family is as lucky as mine, so now I pour my energy into supporting HD families in the San Francisco Bay Area by being the Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  

We Can Never Lose HOPE…

Visit my HD Advocacy/Author Website:  [email protected]

Please make a donation to HDSA and help in the fight against his brain disease that has NO CURE.  HDSA donation page

 

 

 

 

 

 

 

 

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

San Jose Team HOPE Timed 10K Run & 5K Walk Will Be IN-PERSON

The 3rd Annual HDSA San Jose Team Hope 10K Timed Run & 5K Walk was approved by the City of Campbell to hold an IN-PERSON event on June 19th, 2021 at Campbell Park.
10K Runners can pick up their bibs at Campbell Sports Basement on Friday, June 18 from 5-7 pm. 1875 S Bascom Ave Suite 240, Campbell, CA
Get your running and walking shoes on and sign up for the fundraiser to help in the fight against Huntington’s Disease. SIGN UP HERE: hdsa.org/thwsanjose

Runners will be timed courtesy of Record Timing, owner Shawn Laughlin. https://live.recordtiming.com/

Author Therese Crutcher-Marin

I’m the Coordinator for the Run/Walk and we’re so happy that we’ll be seeing and hugging our Huntington’s Disease families and friends in-person.

Please make a donation to the upcoming fundraiser HERE.
We Can Never Lose HOPE…

HD Research

HDSA Brings Young Scientists Into the Field of Huntington’s Disease Research

The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2021 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease. Huntington’s disease (HD) is a rare, hereditary neurodegenerative disorder currently affecting approximately 41,000 Americans. More About HD   

The purpose of this fellowship program is two-fold.  First, to attract the brightest young scientists into the field of Huntington’s disease research; and second, to facilitate meaningful HD research to clarify the biological mechanisms underlying HD pathology.

After review by HDSA’s Scientific Advisory Board, two young scientists were awarded 2021 Donald A. King Summer Research Fellowships.

  • Ratnesh Kesineni (University of Central Florida) will be mentored by former HDSA Human Biology Fellow Dr. Amber Southwell and will explore a potential link between biological age and aggregation of misfolded mutant huntingtin (mHTT) for potential therapeutic targeting.
  • Russell Wells (Whitworth University) will work with Michael Sardinia, PhD, DVM, to study the effects of dihexa, a small molecule that has previously shown positive effects in Alzheimer’s and Parkinson’s disease models, for the treatment of Huntington’s disease phenotypes in mice models.

    Author Therese Crutcher-Marin

    We Can Never Lose HOPE….

  • Click here to make a donation to the nonprofit, HDSA, and help us in the fight against Huntington’s disease……..the cruelest disease on the planet.
HD Awareness

May is Huntington’s Disease Awareness Month

This year, the nonprofit, Huntington’s Disease Society of America,  will be launching two new initiatives during Huntington’s Disease Awareness Month.                                                                                                The 31 Days, 31 Stories video campaign will release a different HD story each day across HDSA’s social media channels.   HDSA will also share the first-ever Athletes vs. HD sports memorabilia auction which will open on May 1st and close on May 15th (International HD Awareness Day).

Learn about the cruelest disease on the planet, HD.

Make a donation to help in the fight against HD.

We Can Never Lose HOPE…