Blog – Page 2 of 38 – Therese Crutcher-Marin

A New Diagnosis of Huntington’s Disease

It’s a shock when families learn that Huntington’s disease is in their family. I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.

HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region. Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.

Find a social worker in your area

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website and learn about HD: https://theresecrutchermarin.com

January 18, 2023 by crutcht

Kindness

How To Show Humanity

As we proceed into the new year, a new chapter, a fresh start, embracing new years resolutions into our lives, I’m focusing on three (3) ways, there are many acts, that I can show humanity to others. Humanity refers to the KIND feelings humans often have for each other:

Hello Human Kindness

Always Look for the Good In People …
Show Compassion…
Give Back To The Community

In my career I strived to work in a positive community that permitted me to serve our fellow man. Hospice work allowed me to care for those dying and their families.

When I retired, I wanted to be of service to the Huntington’s disease (HD) community, having walked with my three (3) sisters-in-law on their HD journey. Volunteering for the Huntington’s Disease Society of America (HDSA) feeds my passion to show my humanity to folks living with HD.

We Can Never Lose HOPE…

To volunteer for a worthy nonprofit, HDSA, and show kindness to the families struggling with Huntington’s disease, a fatal, genetic, rare brain disorder with symptoms like ALS, Parkinson’s and Alzheimers that has NO CURE, visit this website for volunteer positions at the HDSA San Francisco Bay Area Affiliate.

January 11, 2023 by crutcht

Helping Others, Volunteers

Volunteer For Your Health with Huntington’s Disease Society of America

Over the years at my annual physical with my primary doctor, Dr. Shariati, who I’ve seen for years and consider her a friend, we always talked about my involvement with the nonprofit, Huntington’s Disease Society of America (HDSA). As she checked my vitals and other important parts of my body, we talked about Huntington’s disease, and she said, “people who volunteer live longer”.

When you think about this statement, it boils down to helping people and adding this activity to your life can have a positive impact on your own well-being from relieving stress, depression and loneliness. Why is Volunteering Important?

Giving back or giving to others is just as important to a healthy lifestyle as fulfilling their own dreams. As a Huntington’s Disease advocate, volunteering for the HDSA San Francisco Bay Area Affiliate is fulfilling my dream by helping Huntington’s Disease families in my community.

Please reach out to me at [email protected] or go to VolunteerMatch.org and review the volunteer opportunities in the San Francisco Bay Area.

We Can Never Lose HOPE….

January 4, 2023 by crutcht

Hope

Have A Joyous New Year

As we welcome the New Year and 2022 becomes our past, HOPE beats loudly in my heart and soul.

There is so much HOPE in the coming years, for a therapy/cure for Huntington’s disease (HD), the cruelest disease on the planet.

Currently, there are 50+ key companies continuously working towards developing 50+ pipeline drugs for Huntington’s disease treatment. Read the article here

From my family to yours, Happy New Year!

We Can Never Lose Hope…….

Donate to the nonprofit, Huntington’s Disease Society of America (HDSA) to help fight the battle against HD and JHD.

December 30, 2022 by crutcht

HD Advocates, HD Research

Donate to Huntington’s Disease Research

Author Therese Crutcher-Marin

I’m a Huntington’s disease (HD) advocate because my three sisters-in-law, Lora, Marcia and Cindy were victims of the cruelest disease on the planet. I hope to witness a therapy or even a cure in my lifetime so I chose to be involved with the nonprofit, Huntington’s Disease Society of America (HDSA) in this quest.

Research is so important to fight the disease and HDSA funds fellowships/grants; the Human Biology Project, Donald A. King Summer Research Fellowship, Berman-Topper HD Career Development Fellowship (three year grant).

The HDSA Marker-The 2022 Research Report is now available. The latest issue of The Marker is now available for you to review HDSA’s commitment to HD research and look ahead to potential breakthroughs in 2023.

A quote from Dr. Marie Didiot, grant recipient of the Human Biology Project. “Fundraising is one of the major challenges in research. Providing awards in the HD community, as does HDSA, is encouraging researchers to focus on HD and attracted more students with new potential and skills.“

Please make an end of the year donation to the nonprofit, HDSA, to continue funding research.

We Can Never Lose HOPE…….

December 28, 2022 by crutcht

Love

FY23 OMNIBUS APPROPRIATIONS PACKAGE FAILS HUNTINGTON’S DISEASE FAMILIES

I am angry and I’m going to do more in 2023 to get the HD Parity Act passed!

Statement from the nonprofit, Huntington’s Disease Society of America (HDSA).

New York, NY, December 20, 2022 – Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage. The FY23 Omnibus Appropriations Package, which will be voted on later this week, does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.

For HD-affected families, congressional inaction has real consequences. Families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.

Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs. HDSA will stand by them and support them until appropriate care and a cure is available to all.

December 26, 2022 by crutcht

Therese-Author

Fond Memories of Christmas Past

As we approach Christmas Day, a sacred day when Christ was born, I reminisce about the years growing up in a Catholic community and wonderful memories of Christmas with my cousins, aunts, uncles.

My family were staunch Catholic’s and St. Pius X parish, in Mission Kansas, was our community. My two sisters, Ellen, Julie and myself attended elementary school there. Every year during the Christmas season, a huge manger scene was set up in the vestibule with a padded kneeler. I have a picture from 1966, that was in the local newspaper, with my mom and my older sister, Ellen, kneeling at the nativity scene.

“Angels We Have Heard on High” is wonderfully sung and orchestrated in this video,

History of St. Pius X

St. Pius opened on May 27, 1955. On January 27, 1956, St. Pius X School opened its doors to 290 students. Fr. Glowacki served St. Pius X to 1971. (I attended St. Pius from 1961-1969 and I was scared to death of Fr. Glowacki)

FROM MY FAMILY TO YOURS……..

December 21, 2022 by crutcht

Grief, Love

Huntington’s Disease – Grief During The Holiday Season

Author Therese Crutcher-Marin

As some of you know, I call Huntington’s disease (HD), the cruelest disease on the planet. It’s the Holiday Season, a time we celebrate with family/friends and, it can be a difficult time for HD families who have lost loved ones. When I see obituary’s on folks who have passed away from a complication of Huntington’s disease in the holidays, my heart aches for the family. (I’m also sad when it’s not the holidays)

During the holiday season, whether it was a recent loss or one that occurred some time ago, feelings of grief can be heightened and may seem enormous. Griefland by Thomas Nadelin (book on grief)

Experts on grief suggest we remember, new memories does not erase old memories. These memories are precious and can bring comfort to the difficult time. Also, because we LOVE, grief is the price we pay. It is a huge price paid! (it’s not something we think of when we fall in love with someone, or our love for son’s, daughter’s, mothers, fathers, friends, etc.)

We Can Never Lose HOPE…..

December 14, 2022 by crutcht

A Love Story, About Author

Huntington’s Disease

Once upon a time, in the land of uncertainty, there was a young college girl who tried to control every aspect of her life; she lacked spontaneity, felt uncomfortable without a plan, so she always had a plan and a backup plan in case the first plan failed. In other words, she was a control freak.

Until her senior year in college, Therese had been successful living her life in this manner. Her prince, John Marin, entered her life in her sophomore year and she fell irrevocably in love with him and planned a life together after college.

Huntington’s Disease

Then a cruel, frightening, uncontrollable, despicable, incurable monster entered her life; its name was Huntington’s disease (HD) and John and his three sisters were at risk for inheriting the disease.

Huntington’s disease was not to be controlled so Therese planned to not let Huntington’s disease control her. She married her prince even though his future is precarious. It’s not to say it was easy but over time HD offered her lessons that gave her a sense of control; incorporating mindfulness and forgiveness into her life, having HOPE, not taking anything for granted, cherishing John and their life, not sweating the small stuff.