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

Helping Others

Homeless

I post quite often about KINDNESS on my personal Facebook Wall, as a reminder to myself and others.  Every Monday, John and I volunteer at a local Homeless Center to help and show kindness to those who are less fortunate than us.  I am humbled by these folks I interview because of their strength and resilience.  Many of them did not choose to be homeless; bad choices, drugs, alcohol lead them down a slippery slope and, for many reasons, they are unable to change their situation.

The picture of the young man is a client I usually interview on Monday’s.  I won’t mention his name for privacy reasons.  He did allow me to take his picture and share some things about himself and some of his goals.

He recognizes he has a problem with alcohol, wants help because he knows where the alcohol will ultimately lead him.  He used to be married, has several children, has set a goal to be sober and to reconcile with his ex-wife and work towards gaining visitation rights again.

When I don’t see him, I become concerned and I pray he is okay. After our volunteer day on Monday, John and I usually talk at dinner about the day. When I bring up this young man and my concerns, John says, “We can only do so much, Therese.”  And, in my mind I know that, but my heart says something different.

  

We Can Never Lose HOPE……..   

Storytelling

We Learn Through Storytelling

Author Therese Crutcher-Marin

I believe we learn best through stories; whether the story is shared orally, in writing, theatrically, artistically through many mediums, painting, film, architecture, glass, ceramics, etc.

“Stories have power. They delight, enchant, touch, teach, recall, inspire, motivate, challenge. They help us understand. They imprint a picture on our minds. Want to make a point or raise an issue? Tell a story.” — Janet Litherland

Don’t be afraid to write your story.  It’s important and you never know how your story will affect other people. Why is storytelling important?

     

We Can Never Lose Hope………

Author Therese Crutcher-Marin Author Website:  http://www.theresecrutchermarin.com

Watching Their Dance, an inspiration love story while living in the shadow of Huntington’s disease.  100% of the proceeds from the book is being donated to the nonprofit, HDSA.

Available on 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, Forgiveness, Hope, Kindness, Mindful, Thankful

A New Year Has Begun

Happy New Year  To My Fellowman Around The World!

On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.

2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy.  It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future

My sister, Jen, and our dad

John & our children & their spouses

To learn about Genentech/Roche plan, click below on video.

We Can Never Lose HOPE…….

 

Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease.  It can be purchased on her Author Website or Amazon  

100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.

Survival

Self-Reflection

As we near the end of another year, 2018, take time to review the year and reflect on it.  It’s good to stop and think about the past year or you may want to self-reflect more often than a year.  I believe reflecting can move a person forward in the goals or other things they want to change or achieve in their life.  Please, be kind to yourself as you complete this exercise.

Here are suggestions that might help in self-reflection:

  • Recognize your accomplishments and give yourself kudos for what you did well.
  • Reflect on the lessons you learned, as well as the knowledge and skills you acquired.
  • Acknowledge your mistakes and missteps so you can use them as a self-improvement tool.
  • Analyze how you could do better moving forward.
  • Figure out what gives you joy and what you’re truly passionate about.

Articles to guide you through self-reflection:

https://greatist.com/live/reflect-on-your-year

https://thatsquatbot.com/2017/12/12/why-how-self-reflect/

https://www.lifehack.org/696285/how-self-reflection-gives-you-a-happier-and-more-successful-life

We Can Never Lose Hope………

100% of the proceeds from Therese’s book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  Last December, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.  

Therese-Author

We Wish You a Merry Christmas

              Merry Christmas from the Marin Family

        May your day be filled with Laughter, Joy, Friends, and Family   

              

We Can Never Lose Hope……..

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…………..

Family

Christmas In Tuscany Italy

I’ve had something on my Bucket List for a very long time, and this year I get to check it off.   (A Bucket List is a list of things that one has not done before but wants to do before dying.)

My wish is to experience Christmas in another country without the commercialism and hype that we see in the United States. Quite frankly, I’m tired of blow-up snowmen displayed on lawns and the Christmas ads on TV before Halloween.

My family will be celebrating Christmas in the quaint little Italian town of Cortona, Italy. Keith, Fran, Scott and Vanessa will arrive on December 22nd along with Dawn, Jim and Casey Garrett.

Since John and I are retired, we left on November 29th and flew into Lisbon, Portugal and began a journey traveling through Spain, France and into Italy, arriving December 18 . We booked a 9- bedroom villa, Villa Luisella, for a week for all of us to enjoy together. Cortona is a town in the province of Arezzo, in Tuscany, Italy. It is the main cultural and artistic center of the Val di Chiana after Arezzo.     Discover Tuscany-Cortona

A few days after Christmas, December 29th, John and I will take a train to the Zermatt, Switzerland where John will ski and we’ll celebrate the New Year.  

We Can Never Lose Hope……