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Hope

HD Clinical Trials, Hope

The Pharmaceutical Company, Genentech

Statement from Genentech.
“There’s an innate brilliance in each of us. It lives in the thousands of thoughts and feelings that move through our bodies each day. It comes to life in our expressions and movements. In how we connect with each other, and in the moments and memories we create together. 

Neurological conditions can dim this brilliance. They can create barriers that impede our ability to
communicate. To move. To remember. Over time, these diseases can rob us of our identities. 

Our hope is that through our work in neuroscience, combining new scientific understanding with clinical advancements, we can help preserve the unique qualities that make people who they are.” stories/preserving-what-makes-us-who-we-are

Author Therese Crutcher-Marin

Last December, Roche/Genentech announced the locations, including 20 sites in the U.S. and 6 in Canada, for their phase 3 study – called GENERATION HD1 – to test efficacy of the huntingtin-lowering therapy RG6042. To read full press release, visit  RG6042-GENERATION-HD1-Study-update-.pdf

We Can Never Lose HOPE……………..

Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions.

Hope

I Am A Hopeaholic

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

I have to admit, I am a Hopeaholic.  HOPE was my armour protecting me from being drug down into the pit of despair.  HOPE was the only thing that kept me sane for 24 years as John and I stared in the faces of Lora, Marcia and Cindy, my sisters-in-law, as they struggled with Huntington’s disease (HD).

The year our son, Keith, was born was when Huntington’s Disease (HD) became real to my family.  It was October, 1984, when I was in the community hospital giving birth to our first born, while Lora, John’s oldest sister, was deeply depressed and self-medicating with alcohol.  She was in Starting Point, a drug and alcohol rehabilitation center on a different floor of the hospital.  So, John was on a roller coaster, joyous with our new son and upset and sad about Lora.

Lora, John and Keith in our backyard in 1985. Lora was living with us.

John and our son, Keith.

Excerpt from Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, Chapter 13:

“Then he turned away and began talking in a low voice.  It wasn’t hard to figure out what they were discussing.  It made me sad, but just then, a nurse walked in with Keith and placed in my arms this little person I’d been waiting for my whole life.  When John hung up the phone, we each held one of Keith’s tiny hands.  Staring into his bright eyes, I think we both saw HOPE.”

   

Gloria Steinem, one of my female hero’s.  https://www.history.com/topics/womens-history/gloria-steinem

We Can Never Lose Hope……………..

 

Author website:  http://www.theresecrutchermarin.com

 

About Author, Hope

How Huntington’s Disease Enriched My Life

This statement may seem ridiculous given the statement I’ve created for Huntington’s disease (HD); “the cruelest disease on the planet”. I have not changed my mind regarding the statement but HD transformed my way of thinking, in a positive manner, really, without me even knowing it. WhatisHD

After I’d made the decision to marry John, who had an unknown gene status for HD, I realized, in order to not lose my mind with worry, I had to retrain my brain; first, to learn how to live in the moment. how-train-your-brain-think-differently

I learned to embrace what I had right in front of me; John, our love for each other, the life we were building together, and the hopes and dreams we hoped to achieve.

I learned not think too far ahead and what that might mean because nobody has a crystal ball; for my sanity, this moment, this day is what I focused on.

I didn’t learn these things overnight; it took time to transform my way of thinking since I’m a planner, a very detailed planner.  

Like a caterpillar’s transformation into a butterfly, it takes time to relearn how to think. 

We Can Never Lose HOPE……………

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.

Hope

HOPE-A Powerful Emotion

When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE.  what is HD?

HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE.  Both gave me the strength I needed and I lived with HOPE in my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)

HOPE also calmed my FEAR, another powerful emotion, that can consume your thoughts.  

When the world says, ‘Give up’ HOPE whispers,

                      ‘Try it one more time.’

In every book I sell, I write:

We Can Never Lose HOPE………………….

An inspirational love story while living in the shadow of Huntington’s disease.

The theme’s in the book are HOPE, UNCONDITIONAL LOVE and FORGIVENESS.

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

Hope, Huntington's Disease

Great Time to Get Involved

Today is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations.  

I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease.  Jeff says it a great time to become involved in HD research!  

Dr Jeff Carroll, PhD — Boston, USA  https://westerntoday.wwu.edu/features/psychology-s-jeff-carroll-awarded-new-100k-grant-to-research-huntington-s-disease  

 Article, Slightly long CAG repeats are more common than we thought.

For more information about Huntington’s disease please visit  http://www.HDSA.org  & join the fight! To for more information about HD Clinical Trials please visit  http://www.HDTrialFinder.org 

#LetsTalkAboutHD    #HDSAFamily

Hope

Hallelujah! Huntington’s Breakthrough May Stop Disease

Experts say it could be the biggest breakthrough in neurodegenerative diseases for 50 years.

To read the full article go to:     http://www.bbc.com/news/health-42308341?S 

Here are other articles that appeared in the news on December 11th, a day the Huntington’s Disease community rejoiced.

 http://www.hdfoundation.org/research-news/ 

 http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html 

 Statement by Louise Vetta-HDSA President 

 https://www.theguardian.com/science/2017/dec/11/excitement-as-huntingtons-drug-shown-to-slow-progress-of-devastating-disease?CMP=share_btn_fb 

 https://futurism.com/new-gene-therapy-regenerate-brain-tissue-fix-neurological-diseases/ 

 https://en.hdbuzz.net/249

This is the best Christmas present the Huntington’s disease community around the world could receive!  

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 HD organizations around the world.  

Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of my book, Watching Their Dance, via email.

 

 

 

 

 

Hope, Thankful

John’s Test Result for Huntington’s Disease

Story continued from Therese’s blog on August 18th.   http://theresecrutchermarin.com/new-blog-page/

After living a life at risk for Huntington’s disease with John for 37 years, his gene status would  finally be known to us on December 8, 2016.  Dr. Vicki Wheelock at U.C. Davis Center of Excellence would give us the result. HOPE was more important to me now than it had even been.

It just happened that the six weeks we’d have to wait to find out John’s test result was during the holiday season; Christmas. This time of the year is busy and festive, which kept my mind occupied.  It was when I was lying in bed trying to go to sleep that my mind would not be still.  I’ve always had a feeling John didn’t inherit  the mutated gene, as did my mom and grandmother, but Huntington’s disease can show up later in life which meant our kids would be at risk.  Because late onset was a possibility, I was more worried about the kids than John because he was 61, retired and we had enough money and long term healthcare insurance to take care of him.  http://predictivetestingforhd.com/ 

On January 8th, 2016, John and I held hands as we waited in the patient room.  When Dr. Wheelock entered and sat down, my heart was beating so fast I felt dizzy.  I could tell John was nervous, squeezing my hand and taking deep breathes.  Mara, genetic counselor, was also in the room as Dr. Wheelock asked if we wanted to hear the result.  I looked at John, and he nodded.   http://hdsa.org/what-is-hd/#genetic  

The doctor told us it was negative.  My shoulders dropped and my hand covered my mouth.  I have not seen John cry more than two times during our life together, and this was the third time!  We are so grateful and blessed and now our children do not live under the shadow of HD.

We can never lose HOPE………….Therese

Therese is donating 100% of the proceeds from her book, Watching Their Dance: Three Sisters, a Genetic Disease and Watching the Dance Huntingtons DiseaseMarrying into a Family At Risk for Huntington’s, to Huntington’s disease organizations around the world. To purchase a book please see her author website:  http://www.theresecrutchermarin.com  

It’s also available on Amazon and many book websites.

 

 

 

 

 

 

Hope

Genetic Testing Process for Huntington’s Disease

Story continued from blog on August 15, 2017………………..

When John had made the appointment at UC Davis Center of Excellence, he was informed that the cost would be around $1,200.00 for two office visits, and the DNA blood test to determine his gene status. (Only certain labs in the U.S. perform the test).  Also, everything would be conducted anonymously; John became a number on a chart.  https://www.ucdmc.ucdavis.edu/huntingtons/contactus.html  

On December 8, 2015, John and I meet with Dr. Vicki Wheelock, Mara Sifry-Platt, a genetic counselor and a psychiatrist.  We spoke first with Mara and she asked if we could create a family history chart on John’s mothers side of the family.  I handed her one that I’d drawn because that year I had spent many hours conducting genealogy searches on the Cahoon family.  Then the psychiatrist asked John to share his story growing up with Huntington’s disease in his family. John spoke slowly, softly and took his time. After that, Dr. Wheelock examined him, evaluated his gait as he walked, gave him commands to perform, all the while I’m sitting there watching and taking deep breaths to calm my fear.  http://www.hdsa.org  

After the examinations, Mara said the results would be available in six weeks.  We stopped by the nurses station and made THE APPOINTMENT to receive John’s test results; January 8, 2016.  Then, John and I walked to the lab to have his blood drawn.   http://predictivetestingforhd.com/   

When we got to the car, we both were lost in our thoughts, feeling surreal and decided to do something fun and not go straight home to ponder over what we had just done.  So. we went to the movie, enjoyed popcorn and Dr. Pepper, our favorite snack and soda. (Story to be continued on blog August 20)

We can never lose HOPE……………..ThereseWatching the Dance Huntingtons Disease

Therese is donating 100% of the proceeds of her book to HDSA in the U.S. and when the book is bought in another country, she is donating the proceeds to a Huntington’s disease organization in that country. To purchase Watching Their Dance, please go to Therese’s author page  http://www.theresecrutchermarin.com  or Amazon.

 

Hope, Huntington's Disease

HDSA Team HOPE Walks

The Team Hope Walk program is HDSA’s 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 Huntington’s disease and their families. Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $12 million for the cause. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=857D7BD6-C299-258B-BC953D67026BF9CA  

John and I are halfway through my book tour and on our way to Hilliard Ohio for a Team Hope Walk this Saturday, June 22.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189  We will attend another Team Hope Walk in Ohio on August 5 in Dayton.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  We’re looking forward to visiting Ohio, a state we have never been to.

    

  Therese is donating 100% of the proceeds to her book to Huntington’s disease organizations around the world.  Please see her author website to purchase her nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.    http://www.theresecrutchermarin.com