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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………..

 

 

 

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