Browsing Tag

#HDSTRONG

Grief, HD Advocates

Channel Your Grief Into Action

Author Therese Crutcher-Marin, HD Advocate

I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.         

The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.

Genetech roche-drops-huntingtons-disease-trial-with-once-promising-drug-tominersen/and

Wave Life Sciences    news-release-provides-update-phase-1b2a-precision-hd.

So, let’s Channel our grief into Action! We are HD STRONG!

Each one of us can  CHANNEL our GRIEF into ACTION.  The following are suggestions of ways to get involved with the nonprofit, Huntington’s Disease Society of America (HDSA):

  1. HD Research Trial Finder
  2. The HD Parity Act Caucus
  3.  Get Involved with a HDSA Chapter/Affiliates
  4. Get Involved with HDSA NYA

There are other Huntington’s disease organizations you can be involved with:

Help 4 HD-.Help 4 hd

Huntingtons Disease Foundation

We Can Never Lose HOPE………….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:  https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

Grief

Huntington’s Disease Community Lives With Three Layers of Grief

Author Therese Crutcher-Marin, HD Advocate

Working the last ten years of my healthcare in Hospice, I saw how strong of an emotion grief is after losing a loved one.

I married into an Huntington’s Disease family (HD) and while I worked in Hospice, I had first hand experience with Anticipatory Grief when caring for hospice patients and in my personal life.  There are many HD families who have for years cared for a loved one, and who live with anticipatory grief because the HD prognosis is 10-20 years.   What is Huntington’s Disease

So what is Anticipatory Grief?    When a person or family is expecting death, it is normal to begin to anticipate how one will react and cope when that person actually dies.

How to deal with Anticipatory Grief

Over the past year, Huntington’s Disease families have been shrouded in three (3) types of grief: anticipatory grief, pandemic grief and grieving the  halting of the tominersen clinical trial and WAVE PRECISION-HD trials that do not support further development of WVE-120102 and WVE-120101.  These drugs held great promise to stop the progression of this cruel disease.

My plea to HD families is to reach out and not isolate yourself.  HDSA has online support groups and many online resources to help your family.     HDSA Locate Resources          

HDSA Support Group Center:  HDSA supportgroupscentral.com/groups

We Can Never Lose HOPE….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:  https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

Grief, HD Clinical Trials

Unfortunate News Regarding Two Clinical Trials Halted on Huntington’s Disease Drugs

Author Therese Crutcher-Marin

Dear Huntington’s Disease Community.                             

It’s been a very sad week for the Huntington’s disease community around the world with the halting the clinical trial on the Roche/Genentech drug tominersen.  To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

Then yesterday, March 29, 2021, WAVE Life Science announced the decision to discontinue development of WVE-120102.   To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/HD-community-letter_PRECISION-results-final.pdf

 

As we grieve the loss of these once promising drugs, we must stay strong.  Remember, the HD community is

                   #HDSTRONG

                                                                                            and

    WE CAN NEVER LOSE HOPE……

I’m a HD advocate, Chair for the HDSA San FranciscoBay Area Affiliate , a writer and a blogger.

Visit my website at https://theresecrutchermarin.com

HDSA Fundraising events

Amaryllis Holiday Sale Helps in the Fight Against Huntington’s Disease

Order your Amaryllis Holiday Kits Today!   

The amaryllis commonly symbolizes strength and determination. The Huntington’s disease community has adopted this flower to represent hope and celebrate the advancements in HD research.

Order you Amaryllis flower kit(s) here 

The nonprofit, Huntington’s Disease Society of America (HDSA) receives $5.00 from every kit purchase.  Please designate San Francisco Bay Area Affiliate to receive the credit for the sale.

Amaryllis- Individual Kits

Amaryllis bulbs are among the easiest bulbs to grow indoors and the most rewarding. These premium Dutch bulbs need minimal attention but you will be rewarded with spectacular blooms to brighten up the dark winter days.
Planting Amaryllis and watching them grow is a fun activity for the entire family.

Each Amaryllis kit will contain everything you
need to have your own spectacular Amaryllis
this winter including:
• One 26/28 cm Amaryllis Bulb
• Decorative Pot
• Professional Growing Medium
• Planting Care and Aftercare Instructions
Each kit costs only $10.00 (plus s&h)

Author Therese Crutcher-Marin

We Can Never Lose HOPE…….

 

 

HDSA Fundraising events

The Marin Family Team Raises Over $1,000.00 for Huntington’s Disease

 

On Saturday, May 2nd, 2020, the Marin Family Team raised over $1,000.00 to help in the fight against Huntington’s Disease (HD) by participating in a VIRTUAL Team Hope Walk hosted by the nonprofit, Huntington’s Disease Society of America (HDSA).  http://hdsa.org

HDSA is a premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease: a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer simultaneously, and there is NO CURE.

Keith & Fran Marin and Jody Sorenson, Fran’s mom

Since the fundraising event was VIRTUAL, my husband, John, myself and my 90-year old dad, Jim, walked in our neighborhood as did folks across the country.  Our children and their spouses also walked and even though the HD community couldn’t be together, because of the Coronavirus, I felt a sense of camaraderie and solidarity in my heart.

To make a donation, go to:  https://app.donorview.com/Donation/DonationInfo

We Can Never Lose Hope……..           #LetsTalkAboutHD

 

May is HD Awareness Month

May is Huntington’s Disease Awareness Month

Author Therese Crutcher-Marin

MAY is Huntington’s Disease Awareness Month

My name is Therese Crutcher-Marin and I’m kicking off Huntington’s Disease Awareness Month.  For forty years, I’m a Huntington’s disease (HD) advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   My author website:  https://theresecrutchermarin.com

 #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with HD throughout the month of May.

Many people are not familiar with Huntington’s disease and Juvenile Huntington’s disease (HD) and have never seen a person or child with HD or JHD.

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers – simultaneously.  Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.      

                          There is NO CURE, YET!

10% of all HD cases are children with Juvenile Huntington’s Disease.

                               

We Can Never Lose Hope……

HDSA Fundraising events

May 2nd-VIRTUAL Team Hope Walk

A VIRTUAL walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill!

Sign up now and participate in the virtual walk by raising money and awareness. Your family, friends,colleagues and health care providers can join your Virtual Team Hope Walk on MAY 2nd, 2020, 10 AM (PST).  

 

*Join the HDSA Family on May 2nd as we kick off  Huntington’s Disease Awareness Month with the LARGEST TEAM HOPE EVENT EVER!

 

*Register today for the Virtual Team Hope Walk at pacificreg.hdsa.org

       

      JOIN AS A VIRTUAL WALKER FOR FREE! 

 

We Can Never Lose HOPE…….

About Author

A Crossroad at Age 22

The nonfiction book I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, begins with the following words:

Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next.  Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make.  Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment.  That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Never before had I been confronted with such a huge crossroad that caused a dramatic pause. That pause, lasting for seven heartbreaking, confusing months, was whether to continue my relationship with the love of my life, John Marin, who had a 50/50 chance of inheriting Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder with NO CURE and it affects children and adults.  To read more about HD, click here

Having grown up in the Midwest, with 1950’s over protective parents who’s only expectation of their four (4) daughters was to marry and have kids, I lacked life experiences with death and genetic diseases.

Watching the Dance Huntingtons DiseaseBy purchasing my book, you will be helping in the fight against HD because 100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  It can be found on many book websites like amazon.com/Watching-Their-Dance-Marrying-Huntingtons/dp/0998442208:

or on my Author Website:  https://theresecrutchermarin.com/purchase-book/

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE…………..

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-Mar[email protected]  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.

 

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 publishing, 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/