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.

 

May is HD Awareness Month

May Is Huntington’s Disease Awareness Month

Many people have no idea that Huntington’s disease is the cruelest disease on the planet.  Let me tell you why.

  1.  HD is a neurodegenerative disease.  It’s a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  Examples of neurodegenerative diseases include Parkinson’s, Alzheimer’s, and Huntington’s disease.
  2. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.
  3. 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.
  4. HD devastates families for generations since it is genetic.
  5. HD financially cripples families.  The average length of survival after clinical diagnosis is typically 10-20 years, but some people have lived thirty or forty years. Late stage HD may last up to a decade or more.
  6. 16% of all HD cases are children with Juvenile Huntington’s disease.                                             
  7. There is NO CURE.

For more information on Huntington’s disease, go to:  Huntington’s Disease Society of America

100% of the proceeds from my book is being donated to HDSA. So far, I’ve donated over $14,000.00.  amazon Watching-Their-Dance-

               

before you found out he had Huntington's disease?
HD Awareness

Madam Secretary-TV series on Netflix

before you found out he had Huntington's disease?

May is Huntington’s Disease Awareness Month 

John and I are watching the Netflix show, “Madam Secretary” which is a fictional television drama that follows the work of Elizabeth McCord, the United States’ Secretary of State. Madam Secretary Official Site

In Season 2, Episode 6; Catch and Release episode, Huntington’s disease (HD) is used in the storyline. http://www.hdsa.org

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. There is NO CURE for the disease.

Also, the drug Tetrabenazine, is used in the story.  Tetrabenazine is a drug for the symptomatic treatment of hyperkinetic movement disorders. It is sold under the brand names Nitoman and Xenazine among others.

On August 15, 2008, the U.S. Food and Drug Administration approved the use of tetrabenazine to treat chorea associated with Huntington’s disease.

We Can Never Lose HOPE…………….

Therese at the 2018 HDSA Annual Convention in LA.

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

#LetsTalkAboutHD #HDSA

 

 

 

HDSA Fundraising events

The Hobb’s Family

At this year’s Chico California Team Hope Walk, Debra Hobbs will volunteer at the walk for the first time with HDSA’s Pacific Region. Since 2007, Team Hope Walk have occurred in over 100 cities and is a fundraising campaign designed to provide hope and support for those affected by Huntington’s disease (HD).

This 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.

“This is my first time ever doing something like this, and I will do my best,” said Debra. “I have only been to one other walk and I really enjoyed it. To me it brought everyone together and it educated the ones who didn’t know about HD.”

Her story began in 2009 when her husband was diagnosed with HD. She has been with him for over 36 years and has stayed by his side through thick and thin. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

“He went into a deep depression and then he lost his job,” Debra explains. “We lost our home a few years later, because of bad judgment on his part due to HD.”

They would pull through the hard times and settled into their new lives. As the disease progressed, she would eventually become his caretaker.

Debra and her husband lived their entire life in Chico, which includes starting a business there. She wanted to give back to the community as she considered them family.

“I feel that people need to know about HD, and what it does to our loved ones,” said Debra. “My family is being torn apart because of this disease. HD has taken the love of my life away from me. So we need to bring awareness and raise money to find a cure.”

HDSA’s Pacific Region will be hosting the Chico California Team Hope Walk on May 11th from 9:00 AM – 12:00 PM at Cedar Grove Park. For more information, go to http://www.hdsa.org/thwchico.

Huntington’s disease 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. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit http://www.HDSA.org or call 1(800) 345-HDSA.

Author Therese Crutcher-Marin will be working at the event and selling her nonfiction book, WatchingTheir Dance.  100% of the proceeds from the book is being donated to HDSA to help in the fight against Huntington’s disease.  Author Website:  http://www.theresecrutchermarin.com

Love, Taking Care of Yourself

Denial-A Coping Mechanism

Lora, Cindy and Marcia Marin

Definition of Denial.  “The action of declaring something to be untrue.”

I must admit, at times, I lived in denial.  Denial isn’t a bad place, only if you stay there forever, but for me, that place gave me solace for a short time. Article on Denial:  mayoclinic.org/healthy/denial

When situations became unbearable, that is where I sought to be.  When Lora died because of Huntington’s disease (HD), when Marcia had a stroke because of Huntington’s disease, when Cindy was diagnosed with Huntington’s disease, I went to my special place, denial, to regroup, gather strength and recharge. What is HD? https://hdsa.org/#

To be present and help my three sisters-in-law have the highest quality to their life, for as long as possible, escaping to my denial place helped me cope and face another day.

The nonfiction book I published was written in Lora, Marcia, and Cindy’s honor.  100% of the proceeds are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against the cruelest disease on the planet.  Author website:  http://www.theresecrutchermarin.com

 

We Can Never Lose HOPE………………..

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

 

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:  http://www.theresecrutchermarin.com

 

HD Clinical Trials

Enroll -HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort

Author Therese Crutcher-Marin

At this time, in the Huntington’s disease arena around the world, people are needed to participate in the exciting clinical trials being conducted.  Without people, very brave people, we cannot move forward in finding a cure for the cruelest disease on the planet; Huntington’s disease (HD).

Enroll-HD is a longitudinal, observational, multinational study that will integrate two existing Huntington’s Disease (HD) registries, REGISTRY in Europe and COHORT in North America and Australia, while also expanding to include sites in Latin America and Asia. With no end date and annual assessments, the goal of Enroll-HD is to build a large and rich database of longitudinal clinical information and biospecimens. This database will serve as a basis for future studies aimed at developing tools and biomarkers for progression and prognosis, identifying clinically relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies.  To learn more about Enroll-HD, go to:  https://www.enroll-hd.org/

https://chdifoundation.org/huntingtons-disease-society-of-america-endorses-enroll-hd/

https://memory.ucsf.edu/enroll-hd

https://www.hda.org.uk/research/current-research-studies/enroll-hd

Enroll-HD is a “platform”

The idea is that this one study will make all other HD research easier, speeding up the process of developing new drugs and other treatments that really work. Rather than being restricted to a select group of researchers, it will be a resource for all HD science, making it faster and more efficient for other researchers to conduct their projects. This is why it’s called a platform, it supports other work.

To find clinic locations near you, go to:  https://www.enroll-hd.org/participate/clinic-locations/

As promised, HDBuzz’s Jeff Carroll finally signed up for the Enroll-HD study. Learn more about this important global HD “observational study” here. https://en.hdbuzz.net/261

We Can Never Lose Hope…….