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Hope

Priscilla Chan and Mark Zuckerberg Want to Cure All Diseases by 2100

 

Last week, Gayle King, CBS Good Morning news, interviewed Mark Zuckerburg and his wife Priscilla Chan, Facebook leaders, about many topics. I watched some of the interview and, thankfully, saw the discussion that could impact the Huntington’s disease community around the world.

Their goal is to cure all disease diseases by 2100.

        They have committed to 3 billion dollars to achieve this goal.

To read about it, visit facebook-couple-commits-3-billion-to-cure-disease-1.20649

To watch the interview, click here:  https://youtu.be/OfjSLMiQG7U

I won’t be around, if you’re a baby boomer, maybe my great or great, great grandchildren will be on this earth.

After watching the interview, I got to thinking, “I wonder if Huntington’s disease (HD) is high on the list?”

I say this because I believe Huntington’s disease is the cruelest disease on the planet!

All diseases cause some level of suffering, but HD doesn’t just affect the patient, but everyone in the family and the suffering can go on for many years; my two (2) sisters-in-law struggled with HD for 17 years.    What is Huntington’s Disease?

I am a Huntington’s disease advocate, volunteering for Huntington’s Disease Society of America (HDSA), the premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://HDSA.org

We Can Never Lose HOPE…

To learn more about my Huntington’s disease journey and the book I published to raise awareness, generated dollars to donate to HDSA, visit https://theresecrutchermarin.com

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on many book websites like Amazon.

Photo by jdlasica on TrendHype / CC BY

 

 

Hope, Watching Their Dance

More on Updating the Nonfiction Book, “Watching Their Dance”

In the December 3rd blog, I posted about my editor suggesting I update the front cover of Watching Their Dance with a quote from the review I received from Kirkus Reviews.

Full Review:  https://www.kirkusreviews.com/watching-their-dance/

Since I published in 2017, many promising clinical trials have been started around the world, so I also updated pages 306 & 307, “Huntington’s Disease Update”.

Here is an Excerpt from “Huntington’s Disease Update” page 306.

Through the years, I have coined the statement, “Huntington’s disease is the cruelest disease on the planet”. While there is still no treatment or cure for this fatal progressive disease, the Huntington’s disease community has been blessed with good news and HOPE for a treatment has grown exponentially.

In April 2017, when I published Watching Their Dance, Ionis Pharmaceuticals, Inc. had just announced a potential treatment for Huntington’s disease; a gene-silencing program. Experts said it could be the biggest breakthrough in neurodegenerative disease in 50 years.   Ionis stated they had favorable results from its 1/2a trial with the drug, IONIS-HTTRx.

HTTRx targeted the huntingtin gene that provides instruction for creating a protein called huntingtin protein. The mutated huntingtin gene expands causing abnormal CAG counts that creates a toxin protein that kills the nerve cells in the brain, which causes Huntington’s disease.

Author Therese Crutcher-Marin

To continue moving forward, Ionis partnered with Roche Pharmaceuticals to conduct the clinical trials on the drug, now called RG6042. The trial is currently being conducted at 80-90 sites in 15 countries. There are 660 patients with early symptoms of Huntington’s disease enrolled in the study.

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Hope

CHDI Works Strictly On Huntington’s Disease

Author Therese Crutcher-Marin

Huntington’s disease folks may not know about the following organization.  They are another organization helping us move forward to find a therapy/cure.

Please watch the video from CHDI Foundation, Inc.  CHDI is a United States based non-profit biomedical foundation that aims to “rapidly discover and develop drugs that delay or slow the progression of Huntington’s disease“,[4] a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline.  https://chdifoundation.org/

Simon Noble, PhD, CHDI Director, Scientific Communications, states, “CHDI want to have as many families as possible watch it as our reason for producing these videos is to offer families hope.”

We Can Never Lose HOPE….

 

 

Hope

Blog Series on HOPE

I’m kicking off a series on HOPE with a positive video from Post Card from Palm Springs, “Highlights of the 2019 CHDI Therapeutics Conference” with Charles Sabine, Huntington’s Disease Advocate.  Watch the video here:  

At this time, the Huntington’s disease community is filled with HOPE because there are many promising clinical trials being conducted around the world. i.e. Roche RG6042 https://clinicaltrials.gov/ct2/show/NCT03842969, Uniqure AMT-130 https://en.hdbuzz.net/274, Vaccinex vaccinex-signal-trial/, Wave Life Science wave-life-sciences-provides-timing-update-precision-hd-clinical.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting 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       

Mai-Lise Nguyen, Roche Patient Partnership Director says the trial will answer these question, “Does the lowering of mutant huntingtin translate into actual clinical benefit?  Is it a meaningful benefit for patients and their family?”

Approximately 660 people are enrolled in the clinical trial in 15 countries around the world and we all await the results from the trial.

We Can Never Lose HOPE……….. 

 

 

 

 

Hope

The Human Condition and HOPE

The Human Condition: “the characteristics, key events, and situations which compose the essentials of human existence, such as birth, growth, emotionality, aspiration, conflict, and mortality”.  It is a very broad topic which has been and continues to be pondered and analyzed from many perspectives.

I believe HOPE lives in each element of the Human Condition and HOPE lives in the heart of every Huntington’s Disease (HD) family member. HD is a rare brain disorder with symptoms of ALS, Alzheimers and Parkinson’s that no cure.  http://www.hdsa.org

Dr.’s Ed Wild from the U.K. & Jeff Carroll from the U.S.

John and I had HOPE for healthy children with a normal CAG count. HOPE keeps me emotionally grounded and passionate about offering HD information on all my social media platforms so no one fights HD alone. The HD community has  HOPE that researchers will find a cure/therapy.  HOPE keeps my heart open to forgiveness and HOPE allows me to use my mortality to keep me mindful everyday of all the all the blessings I have in my life. 

Lora, Cindy, Marcia Marin

HOPE is what John and I clung to, along with each other, as we watched his three sisters, Marcia, Lora, and Cindy, battle Huntington’s disease over a 24 year period of time. 

HDSA 2019 Convention

I embraced  HOPE, praying everyday John didn’t carry the mutated huntingtin gene.

We must remember, there is power in the emotion of HOPE that can help us through tough times.  Read about /the-power-hope  

 

“The road that is built in HOPE is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.” — Marion Zimmer Bradley, The Fall of Atlantis

 

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:  https://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-