Browsing Category

Hope

Hope, Quality of Life

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

Hope

Prilenia Announces Positive News About The Huntington’s Disease Drug Pridopidine

Prilenia Plans to Submit Marketing Authorization Application (MAA) in the EU for Pridopidine in Huntington’s Disease

-Following positive pre-submission meetings with regulators, Prilenia Therapies plans to submit its MAA (Marketing Authorization Application) for pridopidine, in Huntington’s disease (HD) in mid-2024.

-If approved, pridopidine could be commercially available to patients in Europe as early as 2025.

Activation of the S1R by pridopidine enhances the clearance of toxic proteins, increases energy production, and reduces cellular stress and inflammation.  These mechanisms are crucial for a neuron’s function and survival.

Click here to read the full article

“Prilenia holds orphan drug designation for pridopidine in both HD and ALS in the United States and EU. In addition, pridopidine has received Fast Track designation by the U.S. Food and Drug Administration (FDA) for the treatment of HD. Drugs that receive Fast Track designation may be eligible for more frequent communications with the FDA and may also qualify for accelerated approval and priority review of new drug applications.”

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

 

 

 

Hope

I Was Naive

After I married John Marin, who had an unknown gene status for Huntington’s disease, we did what most newlyweds do; live together in an apartment, a couple of years later purchasing a house and couple of years after that, talking about children.

I was very naive and John left me with the decision to have our own biological children or adopt.  It was a difficult decision to make alone.  I convinced myself that in 30-40 years, if John had the mutated huntingtin gene and the children inherited it, there would be a cure or therapy for symptoms, so I chose to have our children, Keith and Vanessa.

Wow, was I wrong.  30-40 years sounds like a long time, but when it comes to the brain, it is not.  The brain is certainly the least understood organ in the human body.                                 

As I have blogged many times, there is HOPE, with 50+ companies and 50+ pipeline drugs in Huntington’s Disease pipeline landscape.

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