Browsing Tag

#WeCanNeverLoseHope

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 http://www.theresecrutchermarin.com & many book websites like Amazon

 

Helping Others, Kindness

A Thanksgiving Meal for Our Homeless Clients

John and I volunteer on Monday’s at a Homeless Center in Auburn; I interview the clients and John is the shower guy.  After being interviewed, they pick out clean clothes then go to the shower.  (There are 4 shower stalls and John cleans them after every client)  https://www.aubsda.org/

Yesterday, the center held a Thanksgiving Dinner for our clients.  It was awesome and I have never seen so many smiles at one time on their faces.

So, two weeks before the dinner, and in order to know how much food we needed, the interviewers, that’s me, asked clients if they would attend the dinner.

It nearly broke my heart when many of them nodded, then dropped their head and said, “Yes, thank you, thank you.  I don’t have anywhere to go to have a Thanksgiving meal”.

I’m posting this puzzle picture because it portrays how the homeless feel.  Forsaken, forgotten, lost, abandoned, isolated.  John and I feel that the homeless are part of our community, like a piece in a puzzle, and if we can make one day a little bit better for them, then we have helped our fellowman.

We Can Never Lose HOPE….

 

 

 

 

 

Family, Thankful

My Family is Everything

I don’t know what I would do without my family; especially John.  My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott.  Although I don’t say it enough to them, I have the best family.

I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them.  My love for them continues to grow along with the appreciation I feel for them.  why-family-is-not-an-important-thing-its-everything/

Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease  Society of America (HDSA), I use HDSA’s hashtags,  #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time.  What is Huntington’s disease/

Give your family members a hug, forgive and remember, Family is Everything! 

 

 

              

 

 

 

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 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……

Love

Forgiveness

My sisters-in-law, Lora, Marcia and Cindy were my friends, kind, gentle women; they didn’t chose to have Huntington’s disease (HD); it wasn’t their fault.

HD is a fatal genetic disorder that progressively destroys the nerve cells in the brain. There is NO CURE.  It’s like having ALS, Parkinson’s and Alzheimer’s at the same time. http://www.hdsa.org

Fear, anger, sadness overwhelmed me at times and I’m thankful for the counselor I had and for working in the healthcare industry.  I wish I could have done more for Lora, Marcia and Cindy; I did the best I could at the time.  So, after 10 years, I’ve forgiven myself.

Article on:  How to forgive yourself and move on from the past 

“Forgiveness does not change the past, but it does enlarge the future.” ~Paul Boes

                            

“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.” 
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience

 

Therese at the 2018 HDSA Annual Convention in LA selling her book.100% of the proceeds go to HDSA.

We Can Never Lose HOPE……..

Family

Feeling Alone

People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?” 

Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful.  http://hdsa.org/what-is-hd/#risk

I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.

Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out.  Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/   http://www.hdscn.org/     https://help4hd.org/

So, don’t give up!  Help is out there!

We Can Never Lose HOPE…………….