Hope

HOPE-A Powerful Emotion

When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE.  what is HD?

HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE.  Both gave me the strength I needed and I lived with HOPE in my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)

HOPE also calmed my FEAR, another powerful emotion, that can consume your thoughts.  

When the world says, ‘Give up’ HOPE whispers,

                      ‘Try it one more time.’

In every book I sell, I write:

We Can Never Lose HOPE………………….

An inspirational love story while living in the shadow of Huntington’s disease.

The theme’s in the book are HOPE, UNCONDITIONAL LOVE and FORGIVENESS.

You can find the book on many book websites like Amazon www.amazon.com/Watching-Their-Dance-

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

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. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. 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. http://www.hdsa.org

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

End-Of-Life Issues

Make Your Wishes Known

Author Therese Crutcher-Marin

Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive.  Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life?  You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care.  John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.

One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed.  It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.

An Advance Health Care Directive is a gift to your family.  Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.

To read about directives go to:

Express your Healthcare Wishes with an Advance Directive  

and Advance Care Planning

A copy of an Advance Health Care Directive from the California Hospital Association can be downloaded here:

https://www.calhospital.org/sites/main/files/file-attachments/form_3-1_-_english.pdf

We Can Never Lose HOPE…..

 

HD Clinical Studies

Good News for the Huntington’s Disease Community

On September 16, the Huntington’s disease community received the news they have been waiting for.  Roche & Genentech: one company, two names, announces its plans to begin the clinical trial on the drug RG6042 (formerly known as IONIS_HTTRx).

The Ionis-HTTRx drug is an antisense therapy. It targets messenger RNA, a molecule that is an intermediary between DNA, the cell’s genetic material, and the huntingtin protein. Cells use the message as a template to produce the protein. It is designed to stick to a faulty HTT gene’s messenger RNA, reducing the amount of abnormal huntingtin protein the gene generates.

Huntington’s disease (HD) is like having Alzheimer’s, Parkinson’s and ALS at the same time.  There is NO CURE and it affects children and adults.

Update on RG6042 (formerly known as IONIS-HTTRx)

Huntington’s disease global development programme: Two clinical studies to begin by end of 2018

Dear Global Huntington’s Community,

Thank you for your ongoing support and interest in the investigational medicine RG6042 for Huntington’s disease (HD).

Over the past months we and our partner Ionis Pharmaceuticals have been heavily engaged with communities around the world (patient groups, medical professionals, Health Authorities and payers) to collaborate and build the RG6042 global development programme and upcoming studies. We are eager for RG6042 to advance into further clinical development. In addition, as announced last month, the European Medicines Agency granted RG6042 PRIME (“PRIority MEdicine”) designation, which provides promising medicines enhanced interactions with the agency and the potential for accelerated evaluation.       Read the full article here

Article from HDBuzz.net   Roche announces details of its ‘pivotal’ huntingtin lowering study 

Article from huntingtonsdiseasenews.com  https://huntingtonsdiseasenews.com/2018/09/24/roche-announces-2-clinical-studies-potential-huntingtons-therapy-rg6042/

 

Author Therese Crutcher-Marin

We Can Never Lose Hope……….

 

On Writing

“Show, Not Tell” Your Story

I offer this blog to my fellow writers.  If you have heard the phrase,         “Show Not Tell” your story, then you are on the right track.  This phrase suggests writers create scenes that allow readers to visualize what is occurring in the story.  Describe to the reader in detail the room, the colors, the smells, the weather, the emotions of the people involved, etc.

Showing vs. Telling Sentences  Article.

When Pam and I were working to improve my manuscript, she was my editor, enhancing scenes was a priority so the reader felt like they were a fly on the wall watching the story unfolded.  3 Ways to Show, Not Tell Your Story

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 San Francisco Team Hope Walk on October 13.  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.

#LetsTalkAboutHD              #WeCanNeverLoseHope 

#HDAwarenessMonth        #WatchingTheirDance

The Woody Guthrie Family

Anna Canoni-Marjorie Guthrie’s Granddaughter

Anna Canoni, granddaughter of Woody and Marjorie Guthrie, spoke at the 2018 HDSA Annual Convention in Los Angeles CA last June.  Woody had Huntington’s disease (HD). Anna’s a great speaker and I was inspired by her talk about her grandmother, Marjorie Guthrie who is on my hero list. HD is a brain disease that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

History on Marjorie Guthrie:   http://hdsa.org/about-hdsa/hdsa-history/

Anna Canoni is 3rd from the left & Dr. Nancy Wexler is on the far left

Amy Fedele, NorCal Chapter Board member with Anna

I first met Anna last summer when John and I were on a Midwest book tour promoting my nonfiction book Watching Their Dance. We attended the Woody Guthrie Folk Festival in Okemah Oklahoma and some of the Guthrie family were there.  I spoke with Anna and she purchased a copy of my book.

Left to right: Anna, her mother Nora Guthrie, Louise Vetter and Dr. Nancy Wexler

We Can Never Lose HOPE……………..

Therese is donating 100% of the proceeds from her book to Huntington’s Disease Society of America (HDSA). In December, John and Therese gifted $9,015.00 to HDSA which was the profit from 2017 book sales.  Please support this cause by purchasing a copy.

Amazon: Amazon

Kindle: Kindle

B & N: barnesandnoble.com

Nook:  barnesandnoble.com

 

 

 

Forgiveness

Learning to Forgive

Author Therese Crutcher-Marin

I’m currently in a situation where forgiveness would allow me to move forward.  But, I’m stuck and having a hard time forgiving because I don’t understand why it happened, it makes me angry, it indirectly hurting other folks and it’s counter productive.

I talk about kindness and forgiveness on my personal Facebook wall quite often, so at this time, I’m working on not just “Talking the Talk” but “Walking the Talk”.  

THE POWER OF FORGIVENESS – AND WHY IT’S HARD   https://www.powerofpositivity.com/

“The act of forgiveness may just be the single most powerful antidote for the pain caused by others.

Forgiveness does not mean that you “forget it and move on.” Nor does forgiveness mean that you absolve the person of their actions.

Forgiveness, instead, is choosing to compassionately release the desire to punish someone or yourself for an offense.

Yes, forgiveness is a choice. Yes, you can forgive yourself. But here’s the thing: while we may accept these statements on the surface, we often have trouble following through on the act of forgiveness – be it forgiving ourselves or someone else.”

We Can Never Lose Hope………..

 

 

 

 

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

A Love Story, Marketing

Memoir Appeals to a Broad Audience

When I began writing, Watching Their Dance, a nonfiction story, I wanted to appeal to a broad audience.  After educating myself and reading about marketing a book, I realized I needed to narrow my focus first on the audience that I was pretty sure the story would appeal to.  That audience was the Huntington’s disease community.  Once you have success with that audience, then you begin to branch out to another audience.  

Here’s the truth: When you write for everyone, you write for no one.   https://goinswriter.com/writing-tip-be-specific/ 

My biggest supporters, the HD community,  did and still do support me and now I’m branching out to other audiences who might enjoy my book.  The first audience I’m focusing on are readers who like love stories; the second audience are folks who like to read about a person/family overcoming a tremendous challenge in their life.

 Marika Jaegers, HOPES Project Co-Leader & Student Researcher, who reviewed the book, said this:  

“Watching Their Dance offers a wide range of insight into living at risk for Huntington’s, living with Huntington’s, and caring for someone with Huntington’s. It is a worthwhile read for a broad audience: those affected by Huntington’s Disease, those curious about the disease, or those who know nothing of the disease but wish to read a captivating and insightful memoir.”  Stanford Literature-Corner

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     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

We Can Never Lose HOPE………..

#LetsTalkAboutHD      #WeCanNeverLoseHOPE     

#HDSAFamily    #HDSTRONG

 

HDSA Northern California Chapter

The Sacramento Team HOPE Walk

 

The HDSA Northern California Chapter is holding its         10th Annual Sacramento Team HOPE Walk. 

Please come out and help in the fight against the cruelest disease on the planet; Huntington’s disease. (HD is a fatal, genetic brain disorder with no cure. It affects children and adults.  It’s like having ALS, Alzheimer’s and Parkinson’s at the same time).  http://www.hdsa.org

To register go to:  http://www.hdsa.org/thwsacramento

You’ll receive a T-shirt and breakfast will be provided. Coffee, bagels, fruit, yogurt, pastries. 

 

2 great RAFFLE prizes for the kids! GolfLand/SunSplash in Roseville! 

 

HDSA Fundraising events

A Rare Disease That Needs a Cure

 

Phyllis Marin

Lora, Cindy, Marcia Marin

Huntington’s disease (HD) is considered a rare disease because it affects 1 in 10,000 people in the U.S.

Definition:  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.

The gal in the top left hand corner is John’s mother and the three lovely ladies in the other picture are my sisters-in-law.  They all died of complications from Huntington’s disease at young ages.

The disease affects children and adults and there is NO CURE.  Juvenile Huntington’s disease, JHD, is approximately 10% of all cases.

Information on HD from Stanford University 

HDSA Northern California Chapter is hosting the 10th Annual SACRAMENTO TEAM HOPE WALK on September 8th.  http://northernca.hdsa.org/ 

Northern California Chapter FB page:  https://www.facebook.com/hdsanocal/

Please support this 5K Walk along the Sacramento at the River Walk Park in West Sacramento; 651 2nd Street.

Adults-$25.00 Children-$10.00.  When registering prior to the Walk, you will receive a HOPE Walk T-shirt and a free breakfast.

To register, click here:   http://www.hdsa.org/thwsacramento 

 

We Can Never Lose HOPE……