Family, Love

Under Love Is A Stronger Emotion

I’ve been involved with the Huntington’s disease (HD) community for many years and I have witnessed the resilience, courage and love within HD families.  I believe the emotion, Under Love is a Stronger Emotion  is Devotion.  (love, loyalty, or enthusiasm for a person, activity, or cause)  

Huntington’s disease is grueling, heart breaking, a stressful  condition for any family to bear.  HD families are devoted to their loved one, as John and I were to my three sisters-in-law, Lora, Marcia and Cindy.  It comes down to, “that’s what you do for the people you love”.

Two local families, the Miller and Granlund, who I personally know, have shown their love and devotion to their dad/spouse for years. The Miller and Granlund children, recently stepped up and formed a new committee, the HDSA San Francisco Bay Area Chapter HDSA National Youth Alliance (NYA) in honor of their fathers. NYA is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

   

We Can Never Lose Hope…           

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

 

 

 

 

 

 

 

Center of Excellence

Huntington’s Disease Families Benefit From HDSA Centers of Excellence

To expand on my last blog, Hospice, Palliative Care and HDSA Have Similar Goals for Patients, today I’m sharing information on the Centers of Excellence (COE), 55 across our nation with 10 partner sites, funded by the nonprofit, Huntington’s Disease Society of America (HDSA).   UCSF HD Clinic    Stanford HD Clinic 

HDSA doesn’t advertise their Centers of Excellence as palliative care, but it is palliative care; treating symptoms to improve quality of life and then connecting to community supports that are palliative (support groups, in home assistance, education events).

Huntington’s disease, a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s simultaneously, has NO CURE and slowly progresses over 10-20 years.

I believe it is vital for Huntington’s disease families to connect with a Center of Excellence to  address issues as a family’s HD journey changes. The interdisciplinary team at the COE has a discipline/medication for just about every symptoms that occurs in HD patients.

An example:  People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.

To address swallowing issues a referral can be made to a speech therapist who can help the patient and family address it.

We Can Never Lose Hope…           

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

 

Hospice, Huntington's Disease

Hospice, Palliative Care and HDSA Have Similar Goals For Patients

As a Huntington’s disease (HD) Advocate and retired hospice professional, explaining the following three types of care is important for the HD community to know about when caring for a loved one with the disease.  You can find these programs in your community.

The mission/goal of hospice care, palliative care and Huntington’s Disease Society of America have a common thread; a kindred objective that connects the three of them.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life.                   

Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family. 

The nonprofit, Huntington’s Disease Society of America, focuses on improving the lives of everyone affected by Huntington’s disease (HD) and their families. Find Help

So, what is the common thread with these three approaches to care?  All three concentrate on improving the quality of a person’s life when challenged with a life threatening illness; like Huntington’s.

We Can Never Lose HOPE..

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

 

Fundraising

Kate’s Single Batch Toffee Fundraiser for Huntington’s Disease Research

This year, once again, Kate Carrier, owner of Kate’s Single Batch Toffee in San Rafael CA is selling her delicious toffee and donating $10 per box sold to the nonprofit, HDSA San Francisco Bay Area Chapter.

The toffee is delicious and melts in your mouth.
            Every dollar helps in funding Huntington’s Disease research because that is how we are going to eradicate this horrific disease.

Order a box or two through March 9th, 2023: https://katestoffee.com/products/huntingtons-disease-fundraising-toffee-box

Huntington’s disease (HD) is a brain disease that is passed down in families from generation to generation. HD has the symptoms of ALS, Parkinson’s and Alzheimer’s at one time and it strikes young.  And there is NO CURE.

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

Volunteers

HDSA San Francisco Bay Area Chapter

I am thrilled to announce that the HDSA San Francisco Bay Area Affiliate has a NEW STATUS.  We are now the

HDSA San Francisco Bay Area CHAPTER 

It’s very exciting and it could not have happened without the help and support of the Leadership Team; Uma Thontakudi, Steve McConoughey and Jay Denhart-Lillard.

Many thanks go to the Board members who helped the Affiliate realize its goal of become an official Chapter. Everyone on the Board is a volunteer as Huntington’s Disease Society of America is 90% volunteer based.

List of SF Bay Area Chapter Board Members

  • Therese Crutcher-Marin – President
  • Uma Thontakudi – Vice President
  • Jay Denhart-Lillard – Secretary
  • Keith Marin – Treasurer
  • Steve McConoughey
  • Brad Bechtel
  • Ragheb Ashar
  • Fran Marin
  • Heather Williams
  • Nishtha Agale

Advisory Board Members

  • Dr. Michael Geschwind-UCSF
  • Dr. Alexandra Nelson-UCSF
  • Dr. Cameron Dietiker-UCSF
  • Dr. Sharon Sha-Stanford
  • Dr. Kyan Younas-Stanford

We Can Never Lose Hope…           

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

 

HD Clinical Trials, HD Community

GENERATION HD2-Clinical Trial Open to the Huntington’s Disease Community

The HDSA RESEARCH WEBINAR: The Roche/Genentech GENERATION HD2 Study of Tominersen; a new clinical trial that is now open to folks with Huntington’s disease (HD) who meet the criteria. The webinar is worth watching.  
Tominersen is an antisense therapy that acts by reducing the production of all forms of the huntingtin protein (HTT), including its mutated variant (mHTT), which is believed to be the main cause of HD.

Info on the study:
-Adults 25-50 years of age (early stage of HD)
-360 people in the study
-Clinical trial locations will be in 15 countries; more than 1 in US
-16 month treatment period
Go to: http://gene.com/patients/clinical-trial-information to read about the Tominersen study and how to get involved. Or ClinicalTrials.gov or signup for HDTrialFinder

Huntington’s disease is a rare, fatal, genetic brain disorder that has NO CURE, strikes young, is a long and progressive disease and has the symptoms of ALS, Alzheimer’s and Parkinson’s, simultaneously.  41,000 Americans are symptomatic and approximately 200,000 are at risk.

We Can Never Lose Hope…

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

HD Clinical Trials

HDSA Webinar on Why Clinical Trial VIBRANT-HD Was Stopped

  Disappointing news for the Huntington’s disease community from Novartis Pharmaceutical Company regarding stopping the clinical trial VIBRANT-HD.  Read full article here

“Tucked into its latest earnings report, Novartis confirmed to investors that it has stopped developing an experimental drug for Huntington’s disease.

The reason, according to Novartis, was an “overall assessment of the risk-benefit profile” observed in a mid-stage clinical trial named VIBRANT-HD. In August, Novartis said it had temporarily suspended dosing in the study, after discovering that some patients treated with the drug, known as branaplam, were experiencing nerve damage.”

Register for Webinar on February 22, 2023

We Can Never Lose Hope…           

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

 

Mindful

Life is Fragile So Don’t Take Life For Granted

Life is fragile because it is finite; our lives are not endless, but they begin and they come to an end.

Marlena Marin

We can lose loved ones in a split second, major changes can happen on a whim and there are many, many things outside of our control.

Lora, Cindy, Marcia Marin

That is what makes life so fragile.

If anything, Huntington’s disease (HD) has taught me not to take life for granted. When I first learned of HD being in the Marin family I could only think about how unfair it was to Lora, Marcia, Cindy and John to have to live in the shadow of HD; living at risk with a 50/50 chance of inheriting the mutated huntingtin gene from their mother.  With time I came to realize that knowing my world could change overnight was a gift and I began to live MINDFULLY each and every day and I never took John, our life, our love for granted. 

I share my experience in my blog today as a reminder that, “We are fragile creatures, and it is from this weakness, not despite it, that we discover the possibility of true joy.” Desmond Tutu (South African bishop)

We Can Never Lose Hope…           

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

The Marin Siblings, Watching Their Dance

Marcia Wasn’t Angry But I Was

My sister-in-law, Marcia Louise Marin, was the kindest and most unassuming woman I have ever met.  After high school, in 1968, Marcia got a job in the typing pool at Pacific Telephone in the financial district of San Francisco. Marcia advanced in her job quickly to become a professional marketing rep who demonstrated to new businesses how to use their telephone system.  She was a stunning, sheek, professional woman who I admired.   

Unfortunately, she was struck down by Huntington’s disease (HD) at a young age, and watching her decline was very difficult for me.   Needless to say, Huntington’s disease angered me for cutting Marcia’s life, her independence, her career short and leaving John, Keith, Vanessa and myself at age 49.                                      

Watching the Dance Huntingtons DiseaseWhen Marcia died from HD complications in September 1999, John and I held a Celebration of Life at Lassila Funeral Chapel in Auburn California.  At the Celebration, I spoke or really choked on my words to remember Marcia.  The following paragraph is an excerpt from Chapter 31, page 257 of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

“Marcia was one of the sweetest people I’ve ever known.  How I wish her life had been different.  We supported her through the years, dealing with delicate subjects and situations.  She was such a sweetheart, always giving us a look of gratitude that tugged at our hearts.  I watched her with awe and wonder, because she never complained or uttered words of anger.  She never cursed God for her fate and accepted her destiny.”   

We Can Never Lose Hope……             

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

Love

I Took A Risk For LOVE

challengesEvery day families around the world are confronted with challenges in their lives; a devastating Huntington’s disease (HD) diagnosis, a cancer diagnosis, a challenging medical diagnosis, an autistic child, a miscarriage, a significant death, divorce and many other threats.  I don’t know of a family that has not had one at some time in their life.                                  With that said, I took a risk for LOVE with my then boyfriend John, who I ultimately married, with an unknown gene status for Huntington’s disease.  I decided that I was willing to take that risk because I believed,Love that ‘endures all things’ is love that hopes in the face of circumstances that often seem dark”.

John and I had dark times, walking beside Lora, Marcia and Cindy, John’s three sisters, on their HD journey for over 24 years.  Plus, living at risk for HD is stressful and can challenge a relationship, but John and showed the world that love can conquer any hardships, difficulties, and challenges.

We Can Never Lose HOPE…..

To read John and my love story while living in the shadow of HD, read Watching the Dance Huntingtons Disease my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s

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