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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 29, 2024 by
May is HD Awareness Month

Did You Know Huntington’s Disease Has NO CURE?

May is Huntington’s Disease Awareness Month

Did you know there is NO CURE for Huntington’s disease?

Huntington’s disease is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously.

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, HOPE for tomorrow for people with Huntington’s disease and their families.

Please go to Huntington’s Disease Society of America to learn more about Huntington’s disease and join the fight. #LetsTalkAboutHD

Click here to make a donation to the nonprofit, HDSA  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 22, 2024 by
Hope

Living Your Best Life with Huntington’s Disease Presented By Dr. Jiao

FREE VIRTUAL WEBINAR: THURSDAY, MAY 23RD @ 7PM PT

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. #LetsTalkAboutHD

Therese Crutcher-Marin, President of the HDSA SF Bay Area Chapter will introduce Dr. Jiao and share a video of her presentation of, Living Your Best Life With Huntington’s Disease, will be shown.

Register for the webinar here

After the presentation, Dr. Jiao will be available to answer questions.

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 15, 2024 by
HD Clinical Trials

Huntington’s Disease Studies and Clinical Trial Updates by Dr. Dietiker of UCSF Medical Center

Huntington’s Disease Studies and Clinical Trial Updates

On Tuesday, May 14, 2024 at 7 p.m., Therese Crutcher-Marin, President of HDSA San Francisco Bay Area Chapter, will welcome participants to the webinar.

Dr. Cameron Dietiker will present information on Huntington’s Disease Studies and Clinical Trials Update as of Dec. 2, 2023.   Dr. Dietiker, MD at University of California, San Francisco Medical Center and team member at UCSF Huntington’s Disease Clinic. #LetsTalkAboutHD

Dr. Dietiker will be available for questions after the presentation.

Register here:  https://w.ringcentral.com/register/bc9a8d06/5933291b/index.html

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 9, 2024 by
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 8, 2024 by
#LetsTalkAboutHD

Pictures to Use During May-Huntington’s Disease Awareness Month

To Huntington’s disease (HD) families and friends in the San Francisco Bay Area.  May is Huntington’s Disease (HD) Awareness Month.

This month please heighten awareness by using the pictures below with #LetsTalkAboutHD on your social media posts.  By 100’s of people posting, we can heighten HD awareness and the more folks see HD pictures/stories, could motivate them to attend a Team Hope Walk or donate or volunteer with the HDSA SF Bay Area Chapter.

From the marketing experts:  How many times does an ad need to be seen to be effective?
The rule of 7 is based on the marketing principle that customers need to see your brand at least 7 times before they commit to a purchase decision.
 
We Never Can Lose HOPE….
May 2, 2024 by
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

May 1, 2024 by
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……
April 24, 2024 by
Love

Behind the Mask of Huntington’s Disease

Huntington’s disease (HD) is the “cruelest” disease on the planet as it slowly steals our loved ones away from us in so many ways.

This long, progressive, fatal, rare, genetic brain disorder, can have the following symptoms; i.e. cognitive decline, dementia, involuntary movements, behavior and personality changes, unsteady gait, dystonia, slurred speech, swallowing problems that can lead to aspiration, unable to do activities of daily living or their daily self-care activities

The slow progression of the disease, over 10-20 years, is when the Mask of Huntington’s disease begins to hide the face that was loved.

The mother/father/spouse/brother/sister/aunt/uncle face you knew cannot be seen anymore.  During this stressful and energy depleting journey, one can lose sight of the person they once knew and loved. Through the years, HD families continue to care for loved ones because this is what we do for the people we love.  They are still there, behind the Mask of Huntington’s disease.

Lora, Cindy and Marcia Marin

John and I were lucky that his sisters, Lora Marcia and Cindy, never become angry, combative.  They stayed their sweet self.

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

 

 

 

April 17, 2024 by
Rare Diseases

More On Rare Diseases

Did you know?  There are 7,000 RARE DISEASES globally,  impacting 400 million lives and Huntington’s disease (HD) is one of them! That’s more than cancer and AIDS combined.

According to the National Institutes of Health (NIH), approximately 7,000 rare diseases are affecting between 25 and 30 million Americans. This equates to 1 in 10 Americans.   
To take a closer look at rare diseases, in particular neurodegenerative diseases, like ALS, Alzheimers, Parkinson’s, Huntington’s disease and other motor neuron diseases, it is estimated that nearly 7 million people in the U.S. are affected. That is the population of the San Francisco Bay Area; a lot of people.           
41,000 Americans have Huntington’s disease (HD) and more media coverage is needed to heighten HD awareness.  
If you have Huntington’s disease in your family, please help raise awareness of this horrific disease.  Post on your social media platforms linking your favorite HD nonprofit, Huntington’s Disease Society of America, Hereditary Disease Foundation, Help 4 HD, CHDI Foundation, hdreach and make a donation to help in the fight against HD.

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

April 3, 2024 by