Grief

Chapter 22-A Cerebral Hemorrhage

I’d like to share a very difficult time in John and my life. You’ve heard the saying, “I wish I knew then, what I know now”.  These words screamed at me for years.  They have finally silenced because I came to realize that I did what I could with the information and life experience I had at the time.

But my heart still hurts from losing my friend.

My dear friend and sister-in-law, Lora, was spiraling out of control, self-medicating with alcohol.  The threat of Huntington’s disease (HD), deep depression, unable to keep a job and her husband washing his hands of her was too much for her to bear, or really, anyone could bear.

Excerpt from Chapter 22, pg. 176 Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  What is Huntington’s disease?

“Four days after John’s thirty-fifth birthday, the phone range about nine p.m.  My heart skipped a beat, as it had been doing whenever the phone rang.  It was someone from Mercy Hospital in Sacramento, asking in a cool, unemotional voice for John Marin, the brother of Lora Marin. John was just out of the bathroom, and my face must have been white as I handed him the phone.  ‘It’s Mercy Hospital, asking for Lora’s brother.’

He took the receiver, and it was a terrible thing to watch this strong, loving man wilt like a flower.  In a strange monotone, he said, ‘Thank you. Goodbye.’

I hadn’t realized that while John was on the phone, I’d been slowly backing away from him.  Now he was walking toward me like a robot, and I became even more frightened. My hands went over my ears to shut out the words he was going to say.  As my back hit the wall, his arms went around me like a shield. “Lora fell and hit her head.  She has a cerebral hemorrhage, and she’s in a coma.  She doesn’t have much time left.'”

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance is an inspirational  love story while living in the shadow of HD.  100% of the proceeds are being donated to the nonprofit, HDSA. You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

OR on my Author Website:  https://www.theresecrutchermarin.com

 

HDSA Fundraising events

San Jose CA 10K Timed Run for Huntington’s Disease

After many months of planning the San Jose 5K Walk & 10K Timed Run is about two (2) weeks away.

DATE:  June 22nd

WHERE:  Campbell Park Campbell CA https://www.google.com/maps/dir/38.226216,-122.6391552/campbell+park

REGISTERhttp://www.hdsa.org/thwsanjose

WHY: To support the nonprofit, Huntington’s Disease Society of America (HDSA)  http://www.hdsa.org

TIME:  Check-in 8 am.  Runners start @ 9 am and Walkers @ 9:15.

RUNNERS: Pick up bibs at Campbell Sports Basement 1875 S Bascom Ave Suite 240, Campbell on Friday, June 21 from 5-9 pm or date of event.

RACE DIRECTOR:  Therese Crutcher-Marin-theresecrutchermarin@gmail.com  530 906-8415

     

We Can Never Lose HOPE……

What Is Huntington’s Disease?

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. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

 

HD Advocates

Congressmen Kinzinger & Pascrell and Senators Cassidy & Gillibrand Introduce ‘Huntington’s Disease Parity Act’

The Huntington’s Disease Parity Act, H.R. 2770, was re-introduced asking to waive the two (2) year waiting period to receive Medicare Benefits when a person with Huntington’s disease (HD) has been determined to be disabled.

As a doc, I know treating a patient in early stages of disease is critical to good outcomes,” said Senator CassidyMaking patients wait two years for treatment through Medicare puts their health at risk and increases the cost of their care. This legislation ensures patients receive the care they need at the most crucial point in their diagnosis.”

To read the full article, go to:  https://kinzinger.house.gov/news/documentsingle.aspx?DocumentID=402061

Huntington’s Disease Society of America (HDSA) has made it very easy to send a letter to your senator/congressmen in your area.  The letter is written and you put your name on it and add a comment if you like.  Go Here:  https://cqrcengage.com/hdsa/app/onestep-write-a-letter?15&engagementId=496303

If you haven’t signed up to be an HDSA E-Advocate please go here:  https://cqrcengage.com/hdsa/app/register?16&m=182462

This is so important to the Huntington’s Disease community.  Please take the time to send the letter. For more information, contact Jennifer Simpson, LCSW, HDSA Senior Manager, Advocacy & Youth Programs.212 242-1968 Ext. 226.  email-jsimpson@hdsa.org

We Can Never Lose HOPE…………

 

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

May is HD Awareness Month

Woody Guthrie & Huntington’s Disease

Did you know Woody Guthrie died of Huntington’s disease?  He died in 1967 and soon after that, his wife, Marjorie Guthrie, organized the Committee to Combat Huntington’s Disease (CCHD) that evolved into the  Huntington’s Disease Society of America (HDSA). 

You can download and read Marjorie’s story:  Finding Our Way  The Story of Woody and Marjorie Guthrie’s Fight Against Huntington’s Disease.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin Book Signing in Auburn CA

 

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA. Since publications, I’ve donated over $14,000.00.

You can find Watching Their Dance on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance and Author Website https://www.theresecrutchermarin.com

Read a review. Kirkus Review:  www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

May is HD Awareness Month

#LetsTalkAboutHD

We Can Never Lose HOPE……

Therese at the 2018 HDSA Annual Convention in LA.

My name is Therese and I’m an author and a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  Since publication, I have donated over $14,000.00.

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

And on my Author Website: https://www.theresecrutchermarin.com

May is HD Awareness Month

Mission Statement

Mission Statements are important to an organization.  So what is a mission statement?

A mission statement is a brief description of a company’s fundamental purpose.

Author Therese Crutcher-Marin

It answers the question, “Why does our business exist?”  The mission statement articulates the company’s purpose both for those in the organization and for the public.

The following are mission statements from Huntington’s disease organizations around the world.  The mission statements are very similar; HD education, provide resources, family, advance research, importance of quality of life, enriching care.  

Help 4 HD https://help4hd.org/

To educate the world about Huntington’s disease and Juvenile Huntington’s disease through its multimedia communications platform and through community outreach efforts. The aim is to serve resource centers to provide information, education, resources, and care.

HDSA: http://www.hdsa.org

To improve the lives of everyone affected by Huntington’s disease and their families.

Huntington’s Society of Canada:  https://www.huntingtonsociety.ca/

Family is at the heart of our community. Our families and volunteers tell a powerful story of caring people who pull together to improve the quality of life for Canadians impacted by Huntington disease (HD). HD is a fatal hereditary brain disorder with devastating effects on both the mind and body. It is like having the symptoms of Alzheimer’s, Parkinson’s and ALS all in one disease.

Huntington’s Disease Association: https://www.hda.org.uk

To enable everyone affected by Huntington’s disease to live life to their full potential by:

  • Improving care and support
  • Educating families and the professionals who work with them
  • Championing the needs of the Huntington’s community and influencing decision makers

Scottish Huntington’s Association (SHA): https://hdscotland.org/

A Scottish charity that was established by families living with Huntington’s disease (HD) in the late 1980s. Experiencing directly the dearth of services available to them, the organization pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.

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

To fund innovative research towards curing Huntington’s disease and impacting other brain disorders.

Huntington’s Disease Foundationhttps://www.huntingtonsdiseasefoundation.org

Dedicated to eliminating Huntington’s disease through advancement of research and funding the cure; raising HD awareness; enriching care and support for all affected while improving quality of life.

European Huntington’s Disease Network:  http://www.ehdn.org

The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD. Through the EHDN a platform has been created such that basic scientists, clinicians, patients and families can collaborate on academic and industry studies to fulfill its mission.

CHDI Foundationhttps://chdifoundation.org

To develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.

We Can Never Lose HOPE……

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

HDSA Fundraising events

Inaugural San Jose Team Hope 5K Walk & 10K Timed Run

Huntington’s Disease Society of America (HDSA) Chapters/Affiliates have hosted Team Hope Walks across the United States for years.  What is Huntington’s disease?  

Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised more $18 million for the cause. What is Team Hope Walk? 

A group of Huntington’s disease (HD) advocates, in the San Francisco Bay Area, and myself are hosting a Team Hope Walk and adding a 10K Timed Run.  The event is the San Jose Team Hope 5K Walk and 10K Timed Run

We added the Timed Run to bring in folks from outside the HD community to heighten HD awareness and also raise more money to help in the fight against this horrific disease.

The EVENT is being held on the Los Gatos Creek Trail, it’s beautiful, located in the Campbell Park in Campbell.

DATE:   June 22, Saturday.

RUNNERS can pick up their bibs at Sports Basement in Campbell on Friday, June 21, from 5-9 pm. Or the next morning.

TIME:  Check-in starts at 8 am.  10K Runners start at 9 am and Walkers at 9:15 am.

REGISTER: http://www.hdsa.org/thwsanjose

Cost: Runners: $60   Walkers: $25  Children under 12: $10

We Can Never Lose HOPE………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

 

Huntington's Disease

Prevalence of People AT RISK for Huntington’s Disease In San Francisco Bay Area

Author Therese Crutcher-Marin

In my previous blog, I presented the approximate number of folks living with Huntington’s disease (HD) in the San Francisco Bay Area. Approximately, 490 to 700.  What is Huntington’s disease?

So, now I’m looking at how many folks in the same area live AT RISK for the disease.

Statistics tell us that approximately 250,000 Americans live AT-RISK for the disease.

2.2% of the U.S. population live in the Bay Area.  So, 2.2% of 250,000 is approximately 5,500. That’s approximately how many people live AT-Risk for HD in the Bay Area.

The total number of people living in the San Francisco Bay Area affected by HD, either have the disease or living AT RISK, is approximately 5,990 to 6,200.

I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.

I used the statistics from the National Institute of Neurological Disorders and Stroke.  https://www.ninds.nih.gov Huntington’s Disease-Hope-Through

We Can Never Lose HOPE………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.

Huntington's Disease

Prevalence of HD in the San Francisco Bay Area

Huntington’s disease (HD) is considered a rare disease but when you look at the number of American’s affected by the disease, it is disconcerting.

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. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 250,000 at-risk of inheriting the disease. https://hdsa.org/what-is-hd

Let’s evaluate the San Francisco Bay area population:

1.  The Bay Area population is approximately 7.1 millionhttp://www.bayareacensus.ca.gov/

2.  The statistics on the prevalence of Huntington’s Disease in the U.S. is approximately 70 to 100 people per million have HD.

3.  That equates to approximately 490 to 700 people in the Bay Area that are living with HD.  That doesn’t sound like many, but if you’re one of the families struggling with HD, its stressful and devastating.

3.  The total number of people living in the San Francisco Bay Area with HD is approximately 490 to 700.

I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.

I used the statistics from the National Institute of Neurological Disorders and Stroke.  https://www.ninds.nih.gov Huntington’s Disease-Hope-Through

We Can Never Lose HOPE……………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.

#LetsTalkAboutHD #HDSA

 

HDSA

San Francisco Bay Area

Author Therese Crutcher-Marin

After the first of the year, I decided to step down from the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board to collaborate with a group of Huntington’s disease (HD) advocates in the San Francisco Bay Area to develop a HDSA Affiliate.

With a population of approximately seven (7) million, a HDSA Affiliate that could evolve into a Chapter would support Huntington’s disease (HD) families. What is Huntington’s disease?  Click here to learn about HD. http://hdsa.org

So what is an HDSA Affiliate?

An affiliate is a regional representative of HDSA that seeks to promote, assist, enhance and further HDSA’s mission by organizing solely for the purpose of carrying out HDSA’s programs, services and activities through the formation of an officially recognized HDSA Affiliate with a revocable license to use the HDSA name, intellectual property, materials and reputation for that sole purpose for so long as it is a recognized Affiliate. The reality is that an Affiliate is a “Chapter in Training”.

The paperwork has been filed with HDSA and the process could take up to six months to a year.  We are hoping to have a decision from HDSA by the end of 2019.

We Can Never Lose HOPE………

http://omaha.hdsa.org/               http://southernidaho.hdsa.org/      http://texas.hdsa.org/

     

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.