Browsing Tag

#huntingtonsdisease

The Marin Siblings

The Marin Women & Huntington’s Disease

May is Huntington’s Disease Awareness Month and I write today to honor Cynthia Ann Marin, the third sister-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD    

Cynthia Ann Marin

Cindy moved to Canada in 1974, to get away from the smog and millions of people in California.  When I met John, she was as a dental assistant in Surrey, Canada, just above the Canadian border.  John called her a “free spirit” and the positive force in their family.  Like John, she had a wide smile and hazel eyes, and there was no denying their kinship. I always thought of her as a wander lust being because she traveled the world whenever she had enough money.

Cindy inspired me with her free spirit attitude, her passions and her focus on living life as happy as possible.  She taught me about mindfulness and living in the moment, something she was very good at.

John and I thought she would be the one sister who would miss the Huntington’s disease bullet.  Lora and Marcia had symptoms in their 30’s and when Cindy turned 41, we thought she was free of HD.  Unfortunately, that was not the case.  She began losing weight and her gait was very unsteady and she weaved when she stood still.  I cried a river when I knew the HD monster found her.  She was diagnosed in 1994.

John and I miss her everyday and wish we could have grown old together.  On June 4th, 2020 Cindy would have celebrated her 68th birthday.  #LetsTalkAboutHD   Cynthia Ann Marin’s Obituary 

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

 

 

HD Awareness

Turn Your Book into a Movie Voting Continues 22 More Hours

The contest continues!  You have another 22 hours to vote for Watching Their Dance.

TaleFlick.com hosts a contest that allows the public to vote on which stories they want to see adapted to the screen.   

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is one (1) in 40 books competing.

Please VOTE for my book.  It will give Huntington’s Disease great exposure, if I win. For information on Huntington’s disease, please visit http://hdsa.org

VOTE HERE:  https://taleflick.com/pages/discovery?app_data=entry_id%3D241154115%26referer_override%3Dhttps%253A%252F%252Fwww.facebook.com%252F&fbclid=IwAR3XP2nEDEXt1aEoWXUXsXoKhW5vtLKpmohFoUJ7Sp2hDnB3kX8AWdiQsOs

HDSA 2019 Convention

Therese at the 2018 HDSA Annual Convention in LA.

 

 

 

HDSA Fundraising events

Lagunitas Brewing Company Hosts a Fundraiser for Huntington’s Disease

A Heart 4 Huntington’s Beer Event at Lagunitas Brewing Company in Petaluma is the first fundraiser for the NEW HDSA San Francisco Bay Area Affiliate.  Purchase Tickets here
 
Mark your calendars for Monday, February 3rd from 5:30-8:30 p.m.  Bring your friends and family for a night to listen to live music and dance, have a beer(s), wind down from your Monday and help in the fight against Huntington’s disease (HD).  Food truck on site .  What is Huntington’s disease?  
Lagunitas Brewing Company is very generous and offers their venue free on Monday & Tuesday evenings to local nonprofits and they also supply the beer free.  https://lagunitas.com/taproom/petaluma
Also, a popular local Sonoma County band, with a large following, Poyntlyss Sistars Rockin’ Show 
Band are donating their time.   http://www.psband.net/
To purchase tickets, visit:   https://app.donorview.com/ljwEp 
Huntington's Disease

What’s Your Wish This Christmas?

I love the Peanuts Gang and have since I was in 5th grade in 1965.  That’s the year the animated television special, A Charlie Brown Christmas, appeared on TV.  It was the first TV special based on the comic strip Peanuts, by Charles M. Schulz.

Also, that year my parents bought my three (3) sisters and me, an orange sweatshirt with the Peanuts Gang on the front.  I still have the sweatshirt in a storage bin in my garage.  I just cannot give it up with so many memories attached to it.

For my fifth grade Christmas play, we did a short version of A Charlie Brown Christmas.  These are great memories and I cherish them.

When I found the cartoon with Charlie Brown and Snoopy, I just had to blog about it.  This cartoon may mean different things to different people.  For me, “a cure” is for the horrific Huntington’s disease that stole John’s three (3) sisters, mother and aunts, uncles and cousins.  What is Huntington’s disease

To watch and listen to Vince Guaraldi Trio “Christmas Time is Here” (vocal version from A Charlie Brown Christmas) click on link:  https://youtu.be/SvK3jEXJFdg

From my family to yours, Merry Christmas and may your Christmas wishes come true! 

 

Therese-Author

Hang On To A Dream…………….

What is life without dreams?  Or, another way to put it, what are the goals you wish to achieve in your life because you need to set goals in order turn your dreams into reality.

I would venture to say, most people have dreams (goals); whether it be a dream of owning a certain car, a dream vacation, dream home, dream of a spending your life with someone you love, etc.

Article on Differences between goals and dreams

Growing up in Kansas, my dreams were not grandiose; they were pretty simple dreams that I thought would make me happy, i.e. falling in love and sharing my life with my soulmate, going to college, having children and serving my fellowman.

HDSA 2019 Convention

After discovering Huntington’s disease could steal the people I loved, I dreamed of “A World Free of Huntington’s Disease“. I have hung on to that dream for 41 years and will never let go of it and will work towards it until I die.

This is also the Huntington’s Disease Society of America (HDSA) Vision Statement.  hdsa.org/about-hdsa/  

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  As of January 1, 2020, a dream of mine will come to fruition.  A new, official HDSA San Francisco Bay Area Affiliate will begin operating and Amy Fedele is the Co-Chair and I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the San Francisco Bay Area that has a population of 7.1 million.

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

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

 

HD Clinical Trials, HD Research

Stanford University Hosts 1st Annual HD Patient Care & Research Symposium

On Saturday, November 2nd, Stanford University will host a Huntington’s Disease Symposium.

This event was created for patients with Huntington’s disease and their families or others who would like to learn more about the disease.  This symposium will highlight current research and experimental therapies, measures that improve health including nutrition, exercise, and physical therapy strategies to improve psychiatric and cognitive challenges in Huntington’s disease and ways to support the patient and families.

The symposium will highlight experts from Stanford Center of Excellence.

To watch a video on HDSA Centers of Excellence, visit:  HDSACentersofExcellence

When:  November 2, 2019  8:30 am–1 pm

Where:  Michael’s at Shoreline, 2940 North Shoreline Blvd.  Mountain View, CA

Register:  https://www.eventbrite.com/e/stanford-huntington-disease-patient-care-symposium-tickets-71682752041?aff=ebdssbdestsearch

To watch a short video on HDSA Centers of Excellence, visit https://youtu.be/A3dGvRsnUS8


The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/

Author Therese Crutcher-Marin

We Can Never Lose HOPE………

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

 

HDSA Fundraising events

Hounds 4 Huntington’s Costume Dog Walk

It’s Halloween time so dress up your dog, your kids and yourself and help in the fight against Huntington’s disease (HD) by participating in the fundraising event, on October 26, 2019 for the nonprofit, Huntington’s Disease Society of America (HDSA), at Shollenberger Park in Petaluma, California. Shollenberger Park

To register your pooch, go to:https://app.donorview.com/QV7R                             

$25 for first dog & $10 for each additional dog.   

Humans are FREE!   

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.  Learn more about Huntington’s Disease here

There will be contests to enter your dog in; i.e. best costume (dog), biggest dog, smallest dog, shaggiest dog, best behaved dog and a Chinese raffle with lots of wine prizes.

The park trail is a flat 2-mile loop that takes you along the Petaluma River and is wheelchair accessible.

We Can Never Lose HOPE…………..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  To read my HD journey, an inspirational Love story while living in the shadow of HD, see my author website https://www.theresecrutchermarin.com

 

 

HDSA Fundraising events

KPIX5 Bay Area Focus, Dr. Geschwind on Huntington’s Disease & Upcoming SF Hope Walk

On September 26th, 2019 Dr. Geschwind, from UCSF Center of Excellence, and myself were interviewed by Michelle Griego from KPIX5 Bay Area Focus. The segment aired last Sunday.  WhatIsHD?

A huge thank you to Michelle and KPIX5 staff for giving us the opportunity to promote the HDSA San Francisco Team Hope Walk this Saturday, October 5th.

To register, visit http://www.hdsa.org/thwsanfrancisco

Dr. Michael D. Geschwind is a neurologist at the UCSF Memory and Aging Center who specializes in assessing and treating rapidly progressive dementias, including prion diseases such as Creutzfeldt-Jakob disease. He helped establish a hospital program for the assessment of rapidly progressive dementias at UCSF Medical Center, the first of its kind in the country.

In his research, Geschwind studies cognitive dysfunction in movement disorders, such as Huntington’s disease, corticobasal degeneration, progressive supranuclear palsy and other parkinsonian dementias. https://www.ucsfhealth.org/michael.geschwind

To watch the video, click here:  https://www.youtube.com/watch?v=S0ENBjOlAe4

We Can Never Lose HOPE…….

About Author

More About Crossroads

Crossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck

In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever.  Living with an unknown gene status for Huntington’s disease (HD) petrified me and I questioned whether I had the strength and a love strong enough to live a life of uncertainty.  what-is-huntingtons-disease

I go stuck stuck, I felt tied up, for seven (7) months, difficult months with a broken heart.  I felt guilty turning away from John, because he MIGHT have Huntington’s disease.  But I was scared.

 

In the end, I took a leap of faith to be with John and even though his three (3) sisters died from Huntington’s disease, I have never regretted my decision.

We Can Never Lose HOPE….

Therese’s author website: https://www.theresecrutchermarin.com

HDSA 2019 Convention

May is HD Awareness Month

#LetsTalkAboutHD

We Can Never Lose HOPE……

Therese at the 2018 HDSA Annual Convention in LA.

My name is Therese and I’m an author and a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  Since publication, I have donated over $14,000.00.

You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance 

And on my Author Website: https://www.theresecrutchermarin.com