Browsing Tag

#HDawareness

About Author

Take a Chance

Choice, Chance, and Change: The Three C’s of Life. It’s all up to you. It’s scary or empowering depending on how you look at it. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

When I decided to marry John, and took the chance that he had not inherited the mutated huntingtin gene for the worst disease on the planet, Huntington’s disease (HD), I knew the possible consequences of my decision. It may sound strange, but living at risk for HD changed my life for the better; I began living in the moment, enjoying what I had in front of me.

HD is a rare, fatal, incurable brain disease that is like having ALS, Alzheimers and Parkinson’s symptoms at the same time. http://www.hdsa.org

https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/

I’ve never regretted taking the chance as it made our love stronger. In 2016, after living at risk for decades, John tested because he felt he owed it to Keith and Vanessa, our children who were getting married. Thank goodness he tested negative. We are very lucky and grateful because he had a 50/50 chance of inheriting the disease like his three sisters, Lora, Marcia and Cindy.

We Can Never Lose HOPE……..

Therese at the 2018 HDSA Annual Convention in LA.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is an inspirational love story while living in the shadow of Huntington’s disease. Therese has donated $14,115.00 to the nonprofit, Huntington’s Disease Society of America, which is the profit from the book since publication in April 2017. Author website: http://www.theresecrutchermarin.com

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

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……..

Caregiving

Caregivers-Be Kind to Yourself-Part 1

As a caregiver, one must remember to take of yourself because if something happens to you, what will happen to your loved one you care for?  Caregiving a loved one with Huntington’s disease is unique.  Caregivers-Guide-to-Huntington’s Disease

AARP suggests 10 things caregivers can do to stay healthy. 

Here are the first 5.

6-10 will be on my December 6th blog.

1. Eat well-balanced meals

And do so on a regular schedule. Take a daily multivitamin. Drink six to eight glasses of water a day.

2. Exercise every day

Move your body daily, even if it’s simply 15 minutes of stretching, yoga, calisthenics or walking. Use the stairs to keep your circulation going.

3. Get outdoors

Fresh air renews the body and spirit — even if you only have time for a brief outing. When possible, open a window.

4. Get your zzz’s

Strive for a minimum of seven to eight hours of consecutive sleep in a 24-hour period. Nap when your loved one naps.

5. Treat yourself

That is, get treatments for your own aches and pains before they turn into something more serious.

Caregiver support groups can be found on Facebook.  Here’s two to check out:  https://www.facebook.com/groups/103001490399094/

https://www.facebook.com/groups/103001490399094/

We Can Never Lose HOPE……..

100% of the profits from the book 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

 

 

Family, HD Research

Kate Miner’s Sister Jenne Coler-Dark

Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family.  Her mother, and two sisters tested positive.  Kate tested negative.  What-is-HD? 

Jenne Coler-Dark & her husband

Kate & her 2 sisters

Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment.  She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.

A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story

The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time  

To watch the film, please click on link below:

https://theaudienceawards.com/films/the-race-207129?fbclid=IwAR3qzCaijs6hOCgXkaK6VaHSG957KWs7HephWX9qOJK87U-J2m8JBBqqAMQ

  100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com

We Can Never Lose HOPE……………………….

 

 

 

 

 

HDSA Northern California Chapter

The Nonprofit Dear to my Heart

John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years. 

Shana Verstegen with her mother who had HD.

It began long ago, 1978, when John’s family secret was discovered; his mom had HD.  I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father.  http://www.hdsa.org

So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk.  John and I have created “The Marin Team” and want to raise $1,000.00.   Here’s the link to register for the Walk or to make a donation to the event.  Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)   http://www.hdsa.org/THWSacramento

Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954  

 We Can Never Lose Hope……

HD Awareness

Memoir Heightens Huntington’s Disease Awareness

HDSA Northern California Chapter Convention/Education Day

I wrote and published the book, Watching Their Dance, for several reasons and the first reason was to heighten Awareness of Huntington’s Disease.

The book is a tool for others to use to create/heighten Huntington’s disease awareness. The story reads like a novel and appeals to a large audience, especially readers who enjoy a love story with a difficult challenge.  (It’s John and my love story while living in the shadow of HD).

To successfully fundraise for a rare, fatal, hereditary brain disorder, with no cure, like Huntington’s disease, creating awareness is vital.  How can someone be persuaded to give, if they know nothing about the cause (disease)?

So, I ask the many HD community folks who purchased the book, many thanks, to pass it on to someone who knows little about the disease.   What is Huntington’s disease?

I found this interesting article on 15 Way to Skyrocket Awareness for a Cause, and I’m going to implement a couple of the suggestions into my outreach plan.   https://www.youcaring.com/blog/2017/how-to-raise-awareness-for-a-cause

1. Organize educational events

2.  Host fundraising events      

3.  Set a world record                           

4. Be picture perfect

5. Host a video contest

6. Like and comment to win

Branding Your Cause

7. Be consistent

8. Design and distribute swag

9. Boost social media awareness

Content 

10. Produce content others find valuable        

11. Make informational pamphlets

12. Write a press release

Issue Challenges 

13. Make a viral challenge video

14. Challenge your coworkers

15. Take on a challenge

May is Huntington’s Disease Awareness Month

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

In December, Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from 2017 book sales.

#LetsTalkAboutHD   #WeCanNeverLoseHOPE  #WatchingTheirDance  #HDSAFamily

Photo by symphony of love on Foter.com / CC BY-SA

 

 

 

 

 

 

A Love Story

Memoir Receives Excellent Book Review from Stanford University

           MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

HOPES Book Review (Huntington’s Outreach Project for Education, at Stanford University)   HOPES website

    “Huntington’s was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.”

     –Watching Their Dance, pp. 11

     In one life-altering moment, Therese Crutcher-Marin learned that the man she loved and his three beloved sisters were at risk for one of the most devastating genetic diseases: Huntington’s Disease. In Watching Their Dance, Crutcher-Marin recounts her journey of love, uncertainty, loss, and strength in the face of Huntington’s Disease. She tells a vivid and personal story of the experience of loving someone at risk for Huntington’s Disease, meticulously sharing the details of her fears, the symptoms of the disease itself, the care-partner experience, and the loss that inevitably comes with Huntington’s. Thrown into the wildly unsteady and frightening path of Huntington’s, Crutcher-Marin returns repeatedly to the mantra, “nothing is certain in life.”

     Crutcher-Marin weaves in details of her personal struggle with uncertainty, a daunting challenge for a woman averse to taking risks. She skillfully captures the awkwardness and difficulty in breaching the subject of Huntington’s with loved ones, and expresses a deeply personal account of her anxiety and suspicion as she worries that she can see the beginning of Huntington’s symptoms in her husband and friends. The book shows the diverse ways in which Huntington’s Disease can manifest itself in daily life to affect both patients and their care partners.

By Marika Jaeger 07 Jan, 2018 Nonfictional Literature

To read the full review on Stanford’s website please go to: “Watching Their Dance” by Therese Crutcher-Marin

HOPES FB Page   https://www.facebook.com/hopesstanford/ 

We Can Never Lose HOPE………………….            

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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

#LetsTalkAboutHD #HDAwarenessMonth

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

     The HDSA NorCal Chapter Convention is Tomorrow, May 5th.

For those who live in Northern California, and would like information on Huntington’s Disease, the NorCal Chapter will host it’s 2018 Annual Convention/Education Day.   What is HD?   It’s free & lunch is provided.  Please register at:

 http://northernca.hdsa.org/about/norcal-chapter-convention-2018

In the morning, the Convention offers nine (9) workshops to chose from.  10 a.m.-11 a.m. Session 1; 11:15 a.m.-12:15 p.m. Session 2:

  1.  Managing the Behavioral Aspects of HD
  2. Advocacy and Clinical Trials
  3. At Risk Discussion Group
  4. HD and the family: Relationship Changes and Talking to Children
  5. Yoga
  6. HD 101 and Genetic Testing
  7. Gene Positive: Now What?
  8. Increasing Your Support System
  9. Advanced Directives and Power of Attorney

12:15 lunch will be provided and at 1:00 we will assemble in the Main Auditorium.

Dr. Vicki Wheelock, MD, UC Davis will speak about recent research and other news regarding Huntington’s disease.

The address is UC Davis Health Education Building at 4610 X Street, Sacramento, CA.  Hours: 9:30 am to 3:30 pm.    We HOPE to see you there! 

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at the convention.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

 

 

 

 

 

HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

Huntington’s Disease Society of America http://www.hdsa.org

Help4HD International  https://help4hd.org/

Hereditary Disease Foundation   http://www.hdfoundation.org/ 

Huntington’s Disease Foundation  http://www.huntingtonsdiseasefoundation.org/ 

WeHaveAFace  https://www.wehaveaface.org/

  

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 sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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