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crutcht

About Author, Blogging

Ten Years of Blogging

Dear Friends:

Thank you for following my blogs through the years and allowing me to share how Huntington’s Disease (HD)  impacted the Marin family.  A personal goal was to disseminate important Huntington’s Disease (HD) information to you and your family that could keep HOPE high in your heart.

This will be my last blog but before I go, I wish to share my extraordinary HD journey with you.     

In 2010, my Huntington’s disease journey began with the writing of my book, (published in 2017) as I suffered from complicated grief and writing my story validated what my family had endured.

In 2015, I built my HD Advocate/Author website and I began blogging.

I continued addressing my grief by becoming involved with the nonprofit, Huntington’s Disease Society of America (HDSA).  By creating the HDSA SF Bay Area Chapter it allowed me, and the Chapter Leadership Team, to reach San Francisco Bay Area HD families and this work has given me peace.

I never thought the hole (grief) I harbored in my heart for my three sisters-in-law would ever close but through this work, that hole is now the size of a pinhole.

From my family to yours, I wish you well.

We Can Never Lose HOPE………..

 

 

 

November 13, 2024 by
Blogging

A Love Story While Living In the Shadow of Huntington’s Disease

Watching the Dance Huntingtons Disease As I close the chapter on promoting my book, I want to encourage Huntington’s families to share their  Huntington’s disease story in a book/online/local newspapers.  This is a way to heighten the awareness of the disease.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into A Family At Risk for Huntington’s, is John and my love story while living in the shadow of Huntington’s disease (HD).  I share how HD empowered us to live our life fully and not take anything for granted.  Our love gave us strength to live with John’s unknown gene status for the disease and we both incorporated mindfulness in our daily life.

I had many reasons for writing the book and the 1st was a selfish reason. After my three sisters-in-law, Lora, Marcia, Cindy died from HD complications, I was caught in a web of complicated grief and did not know how to navigate through it. Putting my words on paper validated what I had lived through and I was able to move forward. The 2nd motivation was to heighten HD awareness of this cruel disease that affects families for generations, the 3rd purpose was to honor my sisters-in-law and create their legacy.  The 4th reason was to donate the profits from book sales to the nonprofit, Huntington’s Disease Society of America (HDSA). (approximately $16,000.00)

We Can Never Lose Hope…   

2018 HDSA Annual Convention in LA

I’m a Huntington’s disease (HD) advocate, President of the HDSA  San Francisco Bay Area Chapter, 

2017 Book Signing

 

 

October 16, 2024 by
HD Community, Taking Care of Yourself

SF Bay Area Chapter Hosts Family HD Education Day at UCSF Medical Center

To the San Francisco Bay Area Huntington’s Disease Community

Please join the HDSA San Francisco Bay Area Chapter  Education Day in partnership with HDSA Centers of Excellence at Stanford Medicine and University of California, San Francisco.  

It’s a FREE event and lunch will be provided.  Register here

We Can Never Lose HOPE….

 

October 2, 2024 by
HD Research

Recap On Promising Drugs for Huntington’s Disease

The first blog you received this morning, the links did not work. So, I’m sending again.  Thanks for your patience.

In the past few weeks, I have shared information regarding the promising drugs that offer symptom control for Huntington’s disease (HD) patients.  If these drugs prove to be effective, safe and receive approval by the U.S. FDA, they can offer HD families a higher quality to their lives.

This is HUGE for someone like my sister-in-law, Marcia, who had to stop working because she could not remember important aspects of her job. She also had severe chorea and it was before the drugs, Austedo and Ingressa that calm chorea.

And my sister-in-law, Cindy, who could not count change back to a customer.  Both could have worked longer with the drugs that stop cognitive decline due to HD.

You can read about each drug by clicking below.

UniQure AMT-130 Shows Promise of Slowing Huntington’s Disease Progression

Prilenia Therapeutics Huntington’s Disease Drug Pridopidine

Encouraging News from PTC Therapeutics-Pivot-HD Clinical Trial on Drug PTC-518

Sage Dalzanemdor Drug for Huntington’s Disease

We Can Never Lose HOPE….

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

September 11, 2024 by
HD Research

Recap of Promising Drugs for Huntington’s Disease

In the past few weeks, I have shared information  regarding the promising drugs that offer symptom control for Huntington’s disease (HD) patients.  If these drugs prove to be effective, safe and receive approval by the U.S. FDA, they can offer HD families a higher quality to their lives.

This is HUGE for someone like my sister-in-law, Marcia, who had to stop working because she could not remember important aspects of her job. She also had severe chorea and it was before the drugs, Austedo and Ingresso that calm chorea.

And my sister-in-law, Cindy, who could not count change back to a customer.  Both could have worked longer with the drugs that stop cognitive decline due to HD.

You can read about each drug by clicking below.

UniQure AMT-130 Shows Promise of Slowing Huntington’s Disease Progression

Prilenia Therapeutics Huntington’s Disease Drug Pridopidine

Encouraging News from PTC Therapeutics-Pivot-HD Clinical Trial on Drug PTC-518

Sage Dalzanemdor Drug for Huntington’s Disease

We Can Never Lose HOPE….

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

 

September 11, 2024 by
HD Clinical Trials

UniQure AMT-130 Shows Promise of Slowing Huntington’s Disease Progression

We are living in an age where there are many possibilities for a drug for to combat the symptoms of Huntington’s disease (HD).  It is an exciting time for the HD community around the world and my HOPE is at a new level.

Another drug that silences the mutant huntingtin gene, is AMT-130 developed by uniQure.  (uniQure’s gene therapy) AMT-130 involves a harmless virus packaged with genetic material that is designed to lower the amount of huntingtin protein in the brain.  AMT-130 is delivered via a single surgery into the brain, with the goal of permanently lowering levels of huntingtin in nerve cells.

In July 2024, uniQure announced promising interim data demonstrating slowing of disease progression in our ongoing Ph. I/II clinical trials.

These type of drugs, that control symptoms of HD, will help HD families have a higher quality to their lives.  

We Can Never Lose HOPE….

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

 

August 28, 2024 by
Hope

Prilenia Therapeutics Huntington’s Disease Drug Pridopidine

Another Huntington’s Disease (HD) promising drug, pridopidine, a pill, could improve quality of life for people by preserving their independence. HD often include slight disruptions in someone’s ability to perform day-to-day activities, such as handling their finances, remembering directions, and managing household chores.

HD clinicians often use a rating scale to measure “Total Functional Capacity” (TFC), which encompasses many aspects of someone’s capacity to live and function independently.

Prilenia’s drug, pridopidine, supports total functional capacity in people with HD. “PROOF-HD marks the first time in HD that we have had a study suggest benefit on multiple important clinical measures, including progression, cognition, and motor findings,” said North American investigator Andrew Feigin.

Prilenia eyes 2025 launch for Huntington’s drug pridopidine

We Can Never Lose Hope……

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

 

 

August 14, 2024 by
HD Clinical Trials

Encouraging News from PTC Therapeutics-Pivot-HD Clinical Trial on Drug PTC-518

I’m continuing to share exciting news on Huntington’s disease (HD) drugs that could potentially hold the key to a higher quality of life for Huntington’s Disease (HD)  patients/families.  The next promising drug is PTC-518.

On June 20, 2024, Huntington’s Disease Society of America (HDSA) received an update from PTC Therapeutics about their ongoing trial, PIVOT-HD. PIVOT is testing PTC-518, a small molecule drug, taken as a pill, that lowers huntingtin (HTT) in people with Huntington’s disease (HD).

Dr. Sarah Hernandez, editor-in-chief at HDBuzz.net states, “We know that the genetic cause of HD is an expansion of the genetic code within the HTT gene. There’s an extra bit of genetic message that repeats the letters C, A, and G more times than it should. When someone has 40 or more CAG repeats in their HTT gene, they’ll go on to develop HD, unless researchers can find some way to intervene.”

What does the HTT gene do? The HTT gene provides instructions for making a protein called huntingtin.

We Can Never Lose HOPE….

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

 

 

 

 

 

 

 

 

August 7, 2024 by