Browsing Tag

#HDawareness

HDSA Fundraising events

A Chico Fundraiser to Fight Huntington’s Disease

If you haven’t been to Chico California, make a day of it starting with the HDSA Chico Team Hope Walk.  Then after the fundraiser, check out Sierra Nevada Brewing Company in Chico, take a tour and also have lunch or dinner at their restaurant.  https://sierranevada.com/beer/

The Chico Team Hope Walk begins 9 a.m. and the cost is $25.00 and if you registered by 4-1-19, you will receive a T-shirt.

To register:  http://www.hdsa.org/thwchico

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease, Huntington’s disease (HD). HDSA is a premier nonprofit improving the lives of everyone affected by Huntington’s disease.

All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. http://www.hdsa.org

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. #HDSA

John and I will be helping with the event and I’ll also be selling my nonfiction book, Watching Their Dance, at the event. 100% of the profit is being donated to HDSA. So far, I’ve gifted $14,100.00 to HDSA.

Author website: http://www.theresecrutchermarin.com

 

HD Awareness

How Huntington’s Disease Affects Daily Life

Whenever I discover an article, a famous person, resources, a study about Huntington’s disease (HD) I like to blog about it.  What is HD?

An interesting article from the Food & Drug Administration (FDA) on Huntington’s disease:

On September 22, 2015, FDA held a public meeting to hear perspectives from people living with Huntington’s Disease (HD) about disease symptoms, the impact of HD on their daily life, and their experiences with currently available therapies.  As part of this commitment, FDA is holding at least 20 public meetings over a five-year period, each focused on a specific disease area.  To read the complete report:  https://www.fda.gov/downloads/drugs/newsevents/ucm491808.pdf

What I found most interesting is the section, “Overall Impact of Huntington’s Disease on Daily Life”.

Therese at the 2018 HDSA Annual Convention in LA.

Therese with the famous Dr. Nancy Wexler at the 2018 HDSA National Convention in Los Angeles. Therese’s author website is http://www.theresecrutchermarin.com  

100% of the profit from Watching Their Dance is being donated to the nonprofit, HDSA. Since publishing the book, Therese and John have gifted over $14,100.00 to them.

HD Awareness

Huntington’s Disease On TV

Huntington’s disease shows up on television every now and then.  I’m always so happy when it occurs because it is probably one of the least understood of neurodegenerative diseases; i.e. Alzheimers, Parkinson’s, ALS.

House (2004-2012)  Episode:  Lucky Thirteen (2008)

The season four finale reveals Thirteen has the dominant mutation for Huntington’s (HD), the disease from which her mother died. Thirteen’s Huntington’s is more aggressive, greatly decreasing her life expectancy and hastening the onset of symptoms. She exhibits self-destructive behavior, using recreational drugs and having repeated one-night stands. House fires her for recklessness but eventually rehires her. She later ceases to behave self-destructively, agreeing to participate in a Huntington’s disease drug trial.

ER  (1994-2009)  Episode:  Insurrection  (season 9)  (2003)

Features a completely disabled man with Huntington’s disease.  During the chaos caused when Dr. John Carter leads a walk-out to protest unsafe working conditions, the man’s mother disconnects his ventilator so that he can die in peace.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

I’m a HD advocate having lost my 3 sisters-in-law to the disease.  John was the lucky sibling and tested negative for the mutated huntingtin gene.  I will NOT give up on the fight against this horrific disease and I’m hoping I will see a cure in my lifetime.  Read about my experience living with HD in my life.  100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is:  http://www.theresecrutchermarin.com

We Can Never Lose Hope…………

 

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

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……