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#HDSTRONG

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

 

 

 

 

 

 

 

 

May is HD Awareness Month

#LetsTalkAboutHD And Living At Risk

May is Huntington’s Disease Awareness Month

While my personal Huntington’s disease (HD) journey may be unique, it reflects the complex emotional and psychological aspects of living with the fear of Huntington’s disease. This disease not only affects individuals but also impacts entire families.

Though I took the biggest gamble of my life and married John, who had an unknown HD gene status, for me, it was difficult living with the danger.  John did not want to be tested because we were looking at the HD face of his three (3) sisters for 24 years.  He told me, “I want to live with the HOPE that I don’t have it”.

Watching Their Dance

You can read my HD journey, with John, in my book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Seeking professional guidance was key for me managing the mental and emotional toll of living with this fear.

Huntington’s Disease Society of America (HDSA) can help you find a local social worker for you to reach to.

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

May is HD Awareness Month

#LetsTalkAboutHD

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease (HD)Awareness Month in May to encourage families to share their experiences with HD… Post videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families. 

Lora and Phyllis

I wrote the Marin (Cahoon) HD story in the memoir,

Phyllis & Cindy

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s.  I wanted the world to know what HD families deal with for generations and the stress of living at risk, emotional pain, financial hardship HD causes, and the grief felt for years watching a loved disappear.

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

May is HD Awareness Month

HELP US TURN UP THE GLOBAL VOLUME ON HD AWARENESS!

#LetsTalkAboutHD is a social media initiative during May, Huntington’s Disease Awareness Month, to encourage families to share their experiences with Huntington’s Disease (HD).

Please use #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families.
Folks across America need to hear our Huntington’s disease stories so please share your Huntington’s disease story on your FB, X and Linkedin.
Together we can make a difference!                                                                                                       
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 author.  Visit my website  https://theresecrutchermarin.com

HD Clinical Trials, Hospice, Palliative Care

Upcoming Webinars on Huntington’s Disease

May is Huntington’s Disease (HD) Awareness Month and HDSA San Francisco Bay Area Chapter is offering two (2) one-hour webinars on clinical trials that keep our HOPE alive and how to have the best life with HD.

Huntington’s Disease Studies and Clinical Trial Updates Webinar 
Tuesday, May 14th at 7 p.m.
Join the HDSA San Francisco Bay Area Chapter in welcoming Dr. Cameron Dietiker (Neurologist, UCSF) as she discusses current studies and updates ongoing clinical trials in the HD field through Dec. 2, 2023.
Registration is Free and Dr. Dietiker will answer your questions after the presentation.
https://w.ringcentral.com/…/bc9a8d06/5933291b/index.html                                                                                     
Living Your Best Life with Huntington’s Disease Webinar     
Thursday, May 23rd at 7 p.m.
Join the HDSA San Francisco Bay Area Chapter in welcoming Dr. Jocelyn Jiao, MD (Clinical Assistant Professor, Neurology & Neurological Sciences Clinical Assistant Professor, Medicine – Primary Care and Population Health, Stanford) as she discusses Palliative Care and its role in living with Huntington’s Disease.
Registration is Free and Dr. Jiao will answer your questions after the presentation.
      We Can Never Lose HOPE……
San Francisco Bay Area Chapter, SF Chapter Social Worker

HDSA San Francisco Bay Area Chapter Hires a Social Worker

Good news for the San Francisco Bay Area Huntington’s Disease community.

The HDSA San Francisco Bay Area Chapter has hired a part time social worker, Satve Ilango who will respond to phone calls, messages on a new local Huntington’s Disease Chapter helpline that anyone can access.

Satve can answer questions about Huntington’s disease, local resources like a support group, refer to HDSA Center of Excellence at Stanford Medicine or UCSF Medical Center, testing, family planning and much more.

Or if you like email her at:  [email protected]

Satve’s information:

HDSA Company number is: (212) 242-1968
Extension number is: 604
Direct line is: (650) 587-0988

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