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#cure4hdandjhd

About Author

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And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir.  Author Website:    http://www.theresecrutchermarin.com   

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Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 

100% of the proceeds from Therese’s book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  As of December 31, 2018, John and Therese have donated $14,115.00 to HDSA.  The book was published in April 2017.

 We Can Never Lose HOPE………..  Therese

About Author

Change

Choice, Chance and Change: The Three C’s of Life. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

When you make a choice, you change the future.

The huge uncertainty I chose to live with, John had an unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet, caused a huge CHANGE in my life. His 50/50 chance of inheriting this rare, fatal, incurable brain disorder that is like having ALS, Parkinson’s and Alzheimers symptoms at the same time taught me to live in the moment, to live mindfully, which enriched my life.

Through the years, my heart opened up to forgive more easily which lead to loving unconditionally. Even with the sadness John and I experienced, my three sisters-in-law died of complications from HD, made me appreciate and be grateful for everything I had in my life.

Therese is the author of the nonfiction, Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. Therese has received four excellent book reviews from Kirkus, Goodreads, BookLife and Stanford University. To read the reviews, go to: https://theresecrutchermarin.com/goodreads-review/ 

We Can Never Lose HOPE…….

 

Huntington's Disease

Today is Rare Disease Day

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”, or about 1 in 1,500 people.

With that said, Huntington’s Disease (HD) is a rare disease since it affects approximately 30,000 people in the U.S.   What-is-HD

Marjorie Guthrie

The poster child for HD is the famous folk singer Woody Guthrie who died of complications from HD on October 3, 1967. Marjorie Guthrie was instrumental in the quest to heighten HD awareness, and also connecting with the HD families in the United States. She started, The Committee to Combat Huntington’s Disease (CCHD) in 1967. To read more about the CCHD, go to https://hdsa.org/about-hdsa/hdsa-history/

I’m an HD advocate, having lost my three (3) sisters-in-law to the disease. I volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against this horrible disease that affects families for generations. I’m currently working with a group of HD advocates to organize a HDSA Affiliate in the San Francisco Bay Area which, hopefully, in a couple of years will evolve into a HDSA SF Bay Area Chapter. https://hdsa.org/about-hdsa/chapters-affiliates/

Author Therese Crutcher-Marin

100% of the proceeds from Therese’s book is being donated to HDSA. Since publication, Therese has donated $14,115.00. Her author website is: http://www.theresecrutchermarin.com

We Can Never Lose HOPE…..

Resources

Huntington’s Disease Support Groups & Online Support Groups

Ts sign up for the ONLINE support group, go to this website:   https://www.supportgroupscentral.com/groups_

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The UC San Francisco Huntington’s Disease Clinic website:  https://www.ucsfhealth.org/clinics/huntingtons_disease/

UC Davis HD Clinic website:  https://health.ucdavis.edu/huntingtons/

Kaiser HD/Genetic Movement Disorders, Sacramento: https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp

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Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

 
100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  Therese has  donated $14,115.00 to HDSA which was the profit from book/ebook sales since April 2017 when it was published.  .amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208
 

 

 

 

Family, Forgiveness, Hope, Kindness, Mindful, Thankful

A New Year Has Begun

Happy New Year  To My Fellowman Around The World!

On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.

2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy.  It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future

My sister, Jen, and our dad

John & our children & their spouses

To learn about Genentech/Roche plan, click below on video.

We Can Never Lose HOPE…….

 

Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease.  It can be purchased on her Author Website or Amazon  

100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.

Therese-Author

Bray Vineyards in Plymouth California

John and my good friend Oliver Bray, who John has known since grade school, built Bray Vineyards from the ground up.  Ollie lives in Martinez, where they grew up, and is a successful attorney like his father, Frank Bray.  https://www.brayattorneys.com/attorney-bios

In 1996 Oliver Bray and Robin Bray established Bray Vineyards on 50 acres of prime Shenandoah Valley vine land. They have created a lovely, peaceful place, with great wine. Address: 10590 Shenandoah Rd, Plymouth, CA 95669, USA.  https://www.brayvineyards.com/ 

Ollie, John and John’s three sisters, Lora, Marcia and Cindy went to Alhambra High School together and were all good friends.  Ollie was a sponsor for the 2018 HDSA Sacramento Team Hope Walk last September. The three Marin sisters all died of complications from Huntington’s disease. John is the only survivor of a family devastated by Huntington’s disease. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1486

California-Shenandoah Valley wineries    Take a day and visit the many wineries in the Shenandoah Valley and do some wine tasting.  You won’t be disappointed. The wineries are in Amador County off Highway 50 before you hit Placerville California. If you enjoy the wine, you might want to be in the Bray Wine Club like we are.  John and I look forward to our quarterly shipment of Bray wine.

We Can Never Lose Hope…………..

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://www.hdsa.org

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

End-Of-Life Issues

Make Your Wishes Known

Author Therese Crutcher-Marin

Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive.  Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life?  You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care.  John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.

One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed.  It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.

An Advance Health Care Directive is a gift to your family.  Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.

To read about directives go to:

Express your Healthcare Wishes with an Advance Directive  

and Advance Care Planning

A copy of an Advance Health Care Directive from the California Hospital Association can be downloaded here:

https://www.calhospital.org/sites/main/files/file-attachments/form_3-1_-_english.pdf

We Can Never Lose HOPE…..

 

HD Clinical Studies

Good News for the Huntington’s Disease Community

On September 16, the Huntington’s disease community received the news they have been waiting for.  Roche & Genentech: one company, two names, announces its plans to begin the clinical trial on the drug RG6042 (formerly known as IONIS_HTTRx).

The Ionis-HTTRx drug is an antisense therapy. It targets messenger RNA, a molecule that is an intermediary between DNA, the cell’s genetic material, and the huntingtin protein. Cells use the message as a template to produce the protein. It is designed to stick to a faulty HTT gene’s messenger RNA, reducing the amount of abnormal huntingtin protein the gene generates.

Huntington’s disease (HD) is like having Alzheimer’s, Parkinson’s and ALS at the same time.  There is NO CURE and it affects children and adults.

Update on RG6042 (formerly known as IONIS-HTTRx)

Huntington’s disease global development programme: Two clinical studies to begin by end of 2018

Dear Global Huntington’s Community,

Thank you for your ongoing support and interest in the investigational medicine RG6042 for Huntington’s disease (HD).

Over the past months we and our partner Ionis Pharmaceuticals have been heavily engaged with communities around the world (patient groups, medical professionals, Health Authorities and payers) to collaborate and build the RG6042 global development programme and upcoming studies. We are eager for RG6042 to advance into further clinical development. In addition, as announced last month, the European Medicines Agency granted RG6042 PRIME (“PRIority MEdicine”) designation, which provides promising medicines enhanced interactions with the agency and the potential for accelerated evaluation.       Read the full article here

Article from HDBuzz.net   Roche announces details of its ‘pivotal’ huntingtin lowering study 

Article from huntingtonsdiseasenews.com  https://huntingtonsdiseasenews.com/2018/09/24/roche-announces-2-clinical-studies-potential-huntingtons-therapy-rg6042/

 

Author Therese Crutcher-Marin

We Can Never Lose Hope……….

 

The Woody Guthrie Family

Anna Canoni-Marjorie Guthrie’s Granddaughter

Anna Canoni, granddaughter of Woody and Marjorie Guthrie, spoke at the 2018 HDSA Annual Convention in Los Angeles CA last June.  Woody had Huntington’s disease (HD). Anna’s a great speaker and I was inspired by her talk about her grandmother, Marjorie Guthrie who is on my hero list. HD is a brain disease that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

History on Marjorie Guthrie:   http://hdsa.org/about-hdsa/hdsa-history/

Anna Canoni is 3rd from the left & Dr. Nancy Wexler is on the far left

Amy Fedele, NorCal Chapter Board member with Anna

I first met Anna last summer when John and I were on a Midwest book tour promoting my nonfiction book Watching Their Dance. We attended the Woody Guthrie Folk Festival in Okemah Oklahoma and some of the Guthrie family were there.  I spoke with Anna and she purchased a copy of my book.

Left to right: Anna, her mother Nora Guthrie, Louise Vetter and Dr. Nancy Wexler

We Can Never Lose HOPE……………..

Therese is donating 100% of the proceeds from her book to Huntington’s Disease Society of America (HDSA). In December, John and Therese gifted $9,015.00 to HDSA which was the profit from 2017 book sales.  Please support this cause by purchasing a copy.

Amazon: Amazon

Kindle: Kindle

B & N: barnesandnoble.com

Nook:  barnesandnoble.com