Browsing Tag

#WeCanNeverLoseHope

Therese-Author

Miracles Happen Every Day

Sometimes we witness a miracle, a wonder, and overlook the meaning/purpose/impact that the experience can have on our lives. I think folks think of a miracle as a tremendous, jaw dropping event.  To appreciate these special moments in my life, I have changed my perception of what a miracle is.

An encounter I experienced this week at the Homeless Center was about a young man who I’ve seen many times.  I’m an interviewer, asking what services they need that day and I feel I’m a sounding board acknowledging their story, plans, and goals.  The young man,  who I have seen many times, shared that he had been sober for 14 days and that he was being admitted into a 90-day rehab program in a couple of weeks.  I consider this a miracle, so, I congratulated him, gave him a hug, and wished him well.

A while back, one of John’s cousin’s made a statement that made me ponder for a moment, and recognize that what happened in my life was indeed a miracle. The conversation was about divorces in our world today.  The cousin said, “It’s a miracle that you and John didn’t divorce with all you have been through”.  I had to agree.

                              

We Can Never Lose HOPE………….

I’m a Huntington’s Disease advocate having lost my three sisters-in-law to this horrific disease that has no cure.  100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA), to help in the fight against the disease.  What is Huntington’s disease:  http://www.hdsa.org

To purchase the book, go to https://www.amazon.com/Watching-Their-Dance-Marrying-Huntingtons.  It’s also available on many other book websites.

 

HD Clinical Trials

WAVE Life Sciences-An Update on PRECISION-HD Clinical Program

WAVE Life Sciences had a table at the Huntington’s Disease Society of America (HDSA) Convention in Boston last month and I spoke with a rep for quite awhile.  It’s very exciting what they are doing for Huntington’s disease (HD).

“We have designed stereopure oligonucleotides to selectively target the mutant HTT allele to lower the production of mHTT protein while leaving healthy HTT protein relatively intact.” https://www.wavelifesciences.com/

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 usually during their prime working years and has no cure.  http://www.hdsa.org

A little bit of information:  We all have two Huntingtin genes; one from your father, one from your mother.  Say, you have a CAG repeat of 42 from your father and a CAG count of 17 from your mother.

The drug WAVE life Science is conducting clinical trials on, Phase 1b/2a, only lowers the mutated Huntingtin gene and leaves the healthy one alone.

                                                                                                                                                                        

IMPORTANT NEWS

WAVE is currently enrolling adults with early manifest Huntington’s disease (HD) who carry a SNP at the rs362307 (“SNP1”) location for a Phase 1b/2a clinical trial.

Learn more about Wave trials for HD at clinicaltrials.gov 
You may also find information about clinical trials in HD at hdtrialfinder.org 

WAVE is currently enrolling adults with early manifest Huntington’s disease (HD) who carry a SNP at the rs362331 (“SNP2”) location for a Phase 1b/2a clinical trial.

Learn more about Wave trials for HD at clinicaltrials.gov 
You may also find information about clinical trials in HD at hdtrialfinder.org 

We Can Never Lose HOPE…………….

100% of the profits from my book is being donated to the nonprofit, HDSA.  Since publication in 2017, I’ve donated over $14,000.00.  It can be found on many book websites.

 

Hope

The Human Condition and HOPE

The Human Condition: “the characteristics, key events, and situations which compose the essentials of human existence, such as birth, growth, emotionality, aspiration, conflict, and mortality”.  It is a very broad topic which has been and continues to be pondered and analyzed from many perspectives.

I believe HOPE lives in each element of the Human Condition and HOPE lives in the heart of every Huntington’s Disease (HD) family member. HD is a rare brain disorder with symptoms of ALS, Alzheimers and Parkinson’s that no cure.  http://www.hdsa.org

Dr.’s Ed Wild from the U.K. & Jeff Carroll from the U.S.

John and I had HOPE for healthy children with a normal CAG count. HOPE keeps me emotionally grounded and passionate about offering HD information on all my social media platforms so no one fights HD alone. The HD community has  HOPE that researchers will find a cure/therapy.  HOPE keeps my heart open to forgiveness and HOPE allows me to use my mortality to keep me mindful everyday of all the all the blessings I have in my life. 

Lora, Cindy, Marcia Marin

HOPE is what John and I clung to, along with each other, as we watched his three sisters, Marcia, Lora, and Cindy, battle Huntington’s disease over a 24 year period of time. 

HDSA 2019 Convention

I embraced  HOPE, praying everyday John didn’t carry the mutated huntingtin gene.

We must remember, there is power in the emotion of HOPE that can help us through tough times.  Read about /the-power-hope  

 

“The road that is built in HOPE is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.” — Marion Zimmer Bradley, The Fall of Atlantis

 

Hope

I Am A Hopeaholic

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

I have to admit, I am a Hopeaholic.  HOPE was my armour protecting me from being drug down into the pit of despair.  HOPE was the only thing that kept me sane for 24 years as John and I stared in the faces of Lora, Marcia and Cindy, my sisters-in-law, as they struggled with Huntington’s disease (HD).

The year our son, Keith, was born was when Huntington’s Disease (HD) became real to my family.  It was October, 1984, when I was in the community hospital giving birth to our first born, while Lora, John’s oldest sister, was deeply depressed and self-medicating with alcohol.  She was in Starting Point, a drug and alcohol rehabilitation center on a different floor of the hospital.  So, John was on a roller coaster, joyous with our new son and upset and sad about Lora.

Lora, John and Keith in our backyard in 1985. Lora was living with us.

John and our son, Keith.

Excerpt from Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, Chapter 13:

“Then he turned away and began talking in a low voice.  It wasn’t hard to figure out what they were discussing.  It made me sad, but just then, a nurse walked in with Keith and placed in my arms this little person I’d been waiting for my whole life.  When John hung up the phone, we each held one of Keith’s tiny hands.  Staring into his bright eyes, I think we both saw HOPE.”

   

Gloria Steinem, one of my female hero’s.  https://www.history.com/topics/womens-history/gloria-steinem

We Can Never Lose Hope……………..

 

Author website:  https://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 https://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.

About Author, Love

Live, Laugh, Love

Each of us is given but one pass through life.  No retakes.  No repeats. 

So, make a covenant –

To live well.   Be good to yourself, your family and others.   Be big in behavior, not small.  Think mature, not immature.   Take the long view, not shortsighted.   Participate thickly, not thinly.   Consider carefully Abraham Lincoln’s thought that “in the end, it’s not the years in your life that count. It’s the life in your years.”  

Oscar Wilde

Or roll Oscar Wilde’s thought around during the day:  “To live is the rarest thing in the world. Most people exist, that is all.”  Celebrate how great life is.  The world is a beautiful place to be.  Colorful.  Stimulating.  Interesting.

To laugh often.     Laughter cures the soul.  It removes masks.  Humanizes.    Laughter heals many rifts, bridges many gaps.  It builds memories.   Laughter is universal among people.  Laughter makes you live longer.  Laughter makes friends, builds memories. Laughter vanquishes demons and warms your soul.

To love greatly and deeply. Love is the most generous gift given us.  Love makes all else possible.   To love greatly means to love unselfishly, for the sake of others as well as yourself.   To love things beyond yourself, beyond your personal interests. Love gives back two fold. Love improves others.  Love improves the giver.

From Prof. Marty’s Corner https://www.livelaughlove.com/live-laugh-love-blog/philosophy

Author Therese Crutcher-Marin
John and Therese

Love is what got John & I through the tough times…………watching Lora, Marcia & Cindy, my three sisters-in-law, struggle with Huntington’s disease.

Therese’s author website: https://www.theresecrutchermarin.com
A Love Story

Choices-A Fork in the Road

Choice, Chance and Change: The Three C’s of Lifehttps://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

Woody Guthrie Festival 7-2017

 

When I was 22 years old, I had to make the most difficult decision (choice) of my life. I was in love with a man I planned to marry after I graduated from California State University, Sacramento. I was at a fork in the road; marry John and live with the uncertainty of Huntington’s disease (HD) or walk away from the love of my life. HD is a rare, fatal brain disorder that is like having ALS, Alzheimers, and Parkinson’s at the same time. There is no cure. The famous folk singer, Woody Guthrie, had HD. info on HD

FORK IN THE ROAD is a metaphor, based on a literal expression, for a deciding moment in life or history when a major choice of options is required. https://www.success.com/13-quotes-about-making-life-choices/

Many of us have hard choices in our lives; I’ve never met anyone who hasn’t, as it is part of life. Some choices may be more difficult than others; leaving the man I loved who never hurt me or making a choice to stay, was mine.

Fortunately, I had an epiphany which lead me back to my love, John Anthony Marin. 

To help in the fight against Huntington’s disease, that killed my three (3) sisters-in-law, at young ages, John and I are donating 100% of the proceeds from Watching Their Dance, a love story while living in the shadow of HD, to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, we have donated over $14,000.00.  amazon.com/Watching-Their-Dance-

Huntington's Disease

Prevalence of Huntington’s Disease in the U.S.A.

Have you ever wondered where Huntington’s disease (HD) originated? Or why it’s predominantly found among Europeans and those of European descent? What-is-hd/

Europe

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 40-100 per million people. (or 4-10 per 100,000)

Experts estimate that one in every 10,000 persons—nearly 30,000 in the United States—have Huntington’s disease. (10 in 100,000, 100 in a million). Juvenile Huntington’s occurs in approximately 16% of all cases. http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/

100% of the profits from the book, Watching Their Dance, an inspirational love story while living in the shadow of HD, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Since the book was published, in April 2017, Therese has donated $14,100.00 to the nonprofit, Huntington’s Disease Society of America.

Therese at the 2018 HDSA Annual Convention in LA.
HDSA

Compassion Use/Right to Try

The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information.  http://hdsa.org.

Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.

On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue.  Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”

At this time all Expanded Access and Right-To-Try requests to Roche will be denied.  This was discussed in the recent HD Community-wide letter that was released by Roche in June.  Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible.  However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests.  The company Roche/Genentech

https://www.bna.com/righttotry-doesnt-help-n57982092983/

We Can Never Lose HOPE…..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, HDSA. https://theresecrutchermarin.com/purchase-book/

Hospice

November is National Hospice & Palliative Care Month

The last 10 years of my healthcare career was in Hospice at Sutter VNA and Hospice in Auburn California.  “Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice is quality of life and living each day as fully as possible.

What is hospice-care

How to have a talk about hospice care

I’m not a clinical person, I faint at the sight of blood, but empathy is my middle name.  As the Hospice Support Services Supervisor, I lead a Community Outreach Committee, recruited and trained hospice volunteers that I placed in a family’s home, developed & implemented a marketing plan each year, supervised the CBAG program (Children’s Bereavement Art Group) and the local hospice thrift store that I started from ground up.

Cicely Saunders, founder of Hospice.

Every November was an exciting time for the Outreach Committee because it afforded us the opportunity to reach out to doctors and the community to help them understand the benefits of hospice care.

About Dame Cicely Saunders 

We Can Never Lose HOPE…..

100% of the profits from Watching Their Dance are being donated to the nonprofit, Huntington’s Disease Society of America, (HDSA).  

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