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#huntingtonsdisease

About Author

Advocating for Huntington’s Heals My Heart

Finding one’s passion in life and being able to act upon it is a great feeling.  Supporting a cause close to one’s heart is very rewarding and support can take many forms; financially donating, volunteering one’s time, and/or participating in fundraising events, etc.

John and I have been connected to the nonprofit, Huntington’s Disease Society of America (HDSA) since 1978 when John and his three sisters discovered Huntington’s Disease (HD) in their family.  Over the years, we made financial contributions, but after HD stole my three sisters-in-law I wanted to be involved with HDSA.  Involvement with HDSA, the HD community and organizing fundraising and outreach efforts, truly HEALS MY HEART.

Get involved today with what’s important to you and what will make you happy.

https://tinybuddha.com/blog/try-this-if-youre-struggling-to-find-your-passion/

 

 

 

We Can Never Lose Hope……………………

Therese at the 2018 HDSA Annual Convention in LA.

 

About Author

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And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir.  Author Website:    http://www.theresecrutchermarin.com   

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Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 

100% of the proceeds from Therese’s book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  As of December 31, 2018, John and Therese have donated $14,115.00 to HDSA.  The book was published in April 2017.

 We Can Never Lose HOPE………..  Therese

HD Awareness

ASHG Chooses Huntington’s Disease as Topic for 2019 Essay Contest


The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April 25, 2019). This date commemorates the completion of the Human Genome Project in April 2003 and the discovery of the double helix of DNA in 1953. http://www.ashg.org/ 

This year HDSA was very pleased to learn that ASHG’s featured essay contest topic centers on Huntington’s disease, posing a thought-provoking question about the family ethics around diagnosis. We hope this contest will promote awareness of HD by encouraging applicants to learn more about it and to think deeply about the issues faced by the HD community. For more information on the essay contest, click here

If you know a high schooler who might be interested in applying, please direct them to this website and spread the word! Essays are due March 8th, 2019, and winners will receive prizes of $100 – $1000. 

$16.99

100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which is the profit since the book was published in April 2017.

WE CAN NEVER LOSE HOPE……

Huntington's Disease

Prevalence of Huntington’s Disease Around the World- In the U.K.

Have you ever wondered where Huntington’s disease (HD) originated. Over the years, I have been curious where and when it started appearing in people. So, I did some digging and discovered some interesting facts.

Europe has been highly significant to the history and study of HD. The greatest frequencies of HD are found in Europe and among populations of European descent. Most scholars believe that European migration was what brought HD alleles into the continents of North America, South America, Australia and New Zealand, and the prevalence of HD in these regions is now similar to that of Europe, where HD affects around 4-10 per 100,000 people. HD-in-europe/#united-kingdom

Origins 
The United Kingdom (U.K.) is the hereditary origin of many of the first cases that were identified as Huntington’s disease (HD). Scholars have traced thousands of prominent cases of HD in New England, U.S.A., back to a few families that emigrated in the seventeenth century from Suffolk in England.

Currently, it is estimated the prevalence of HD in the U.K. is approximately 12.4 per/ 100,000. Since this is a conservative estimate, which only includes people in contact with the Huntington’s Disease Association (HDA), the true prevalence of HD in the U.K. must be even higher. 

The HDA website has a wealth of information on Huntington’s disease in the United Kingdom: https://www.hda.org.uk/

We Can Never Lose HOPE……

HD Awareness

BBC-Call the Midwife

Author Jennifer Worth

I’m always watching for television shows that bring a Huntington’s disease storyline into a program. One evening I was looking at Netflix series and Call the Midwife, a BBC television show, caught my interest. It’s based on a trilogy by author Jennifer Worth.

It soon became one of my favorite shows. Then, quite by accident, I discovered Huntington’s disease (HD) would become a storyline in season 7; actually I saw a post on Facebook. “Call the Midwife” viewers left heartbroken after character is diagnosed with Huntington’s disease” call-midwife-season-7-episode-3-recap Currently, I’m watching season 5. I look forward to watching it. what-is-hd?

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE……….

100% of the profits from Watching Their Dance is being donated to the nonprofit, HDSA.

HD Awareness

“Chicago Med” and Huntington’s Disease

I have watched many TV MEDICAL SHOWS through the years & every so often, Huntington’s disease (HD) shows up in the script. On October 24, 2018, the “CHICAGO MED” episode featured a Huntington’s Disease patient brought into the ER.  https://www.nbc.com/chicago-med

Here’s a little info about the episode and the dilemma the doctors are challenged with concerning the HD patient.  What-is-HD?

“Protocol, as it turned out, was a major thorn in the side for Ava and Dr. Charles tonight, as well. They did their best to help a man who had Huntington’s Disease and refused to tell his son about it. He would rather die, but the problem there is that his son wouldn’t really know the truth about it. Thanks to Dr. Charles, though, there may be a way in order to help the son out for his future.”

I was thrilled to see Huntington’s disease on a popular TV show because it heightens awareness.  I wish they would have explained the disease in more detail, but I hate to complain since it was on prime time.  Hopefully, folks watching better understand the challenges of the disease.

Thank you NBC!  You can watch the episode on HULU if you have it.

We Can Never Lose HOPE….

         

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

Family

Genetic Information Non-Discrimination Act-GINA

In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance.  He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD

To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.

Well, I wish GINA had been established at that time because I applied to ten (10) Life Insurance companies and John was denied by all of them.  The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers.  Go here for FAQ’s about GINA.  what-is-gina-and-when-does-it-take-effect

I remember the question that was on the applications that was the cause the denial:  “If a parent is deceased, what was the cause of their death?”  I wrote, “Huntington’s disease”.

We Can Never Lose HOPE……..

             

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

 

Family

The Birth of Christ and Advent

My mother holding me during my first Christmas

Me with older sister, Ellen

In the 1960’s, when my three sisters and I were growing up in Shawnee Mission, Kansas, my parents, Jim and Rita always made Christmas special for their children.  Since we were a Catholic family, the focus was on the birth of Christ. Every year, my mother brought out the Advent Wreath that held three purple candles and one pink, designating the four weeks before Christmas.  Before dinner, we said our prayer and then lit the appropriate candle(s). The themes of Advent are hope, peace, joy and love.

I have fond memories of Christmas Eve; dinner and presents at my Grandparents home, midnight Mass and a life size Nativity scene in the hall outside St. Pius Church entrance.

May your holiday be filled with hope, happiness, love and family memories, new and old. 

                              Merry Christmas 

We Can Never Lose Hope…..

Therese-Author

Bray Vineyards in Plymouth California

John and my good friend Oliver Bray, who John has known since grade school, built Bray Vineyards from the ground up.  Ollie lives in Martinez, where they grew up, and is a successful attorney like his father, Frank Bray.  https://www.brayattorneys.com/attorney-bios

In 1996 Oliver Bray and Robin Bray established Bray Vineyards on 50 acres of prime Shenandoah Valley vine land. They have created a lovely, peaceful place, with great wine. Address: 10590 Shenandoah Rd, Plymouth, CA 95669, USA.  https://www.brayvineyards.com/ 

Ollie, John and John’s three sisters, Lora, Marcia and Cindy went to Alhambra High School together and were all good friends.  Ollie was a sponsor for the 2018 HDSA Sacramento Team Hope Walk last September. The three Marin sisters all died of complications from Huntington’s disease. John is the only survivor of a family devastated by Huntington’s disease. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1486

California-Shenandoah Valley wineries    Take a day and visit the many wineries in the Shenandoah Valley and do some wine tasting.  You won’t be disappointed. The wineries are in Amador County off Highway 50 before you hit Placerville California. If you enjoy the wine, you might want to be in the Bray Wine Club like we are.  John and I look forward to our quarterly shipment of Bray wine.

We Can Never Lose Hope…………..

Caregiving, Taking Care of Yourself

Caregivers-Be Kind to Yourself-Part 2

This blog is continued from December 4th blog on CAREGIVING

6. Don’t ignore your emotions

Pay attention to your own feelings and emotions, and seek counseling if needed. Vent feelings to trusted family members or friends.

7. Take time for yourself

Use relaxation or stress management methods such as meditation, visualization and yoga. Books and videos are available to guide you in these techniques.

8. Read, pray or meditate for at least 15 minutes a day         

My 102 yr. old Grandmother Chris Crutcher. My Aunt Trina & 2 cousins looked after her.

Consume daily prayer books and helpful magazines like Today’s Caregiver and Caring Today, or books such as Chicken Soup for the Caregiver’s Soul to uplift your spirits. If you’re religious, seek the counsel of a spiritual leader you trust and respect.

9. Chuckle more often

Laugh, reminisce and share stories of happy times.

10. Ask for help

Friends, family and religious groups may be eager to assist and are only waiting to be asked and directed. Doing everything yourself deprives others of an opportunity to serve.

Articles on being a caregiver:

mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress

UCDavis Caregiver & Community Resources 

We Can Never Lose HOPE……

100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon