Browsing Tag

#LetsTalkAboutHD

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.

Hospice, Love

My Journey’s End

Author Therese Crutcher-Marin

“My Journey’s End is a place to which someone or something is going or being sent.”

Throughout my life I’ve had several My Journey’s End;  the first was during college when the Marin siblings discovered they were at risk for Huntington’s Disease and I walked away from John because I was scared. After an epiphany, I was sent to John, the love of my life and my Journey’s End for love ended.

Another My Journey’s End occurred during my career in healthcare.  In 1991, our children were young and I was working part time managing the Lifeline program at our local hospital in Auburn.  I was looking for another part time position to become full time; my anxiety would lessen when I was working full time.  One day I ran into the Hospice Director and she asked me to consider the Hospice Support Services Manager position, a part time position. We had just moved Marcia, my sister-in-law with HD, to our town and I was managing her care.  I believe I was sent to Hospice, destined, to work and learn from the dying.  I see this as My Journey’s End as far as my career and was blessed to work in Hospice for the last ten years of my healthcare career.

Three years prior, Lora, John’s oldest sister, had died from bad fall and Cindy was showing symptoms of Huntington’s disease.  Both Marcia and Cindy were on my hospice program and died peacefully at a Residential Care Facility in Auburn.

We Can Never Lose HOPE……….

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a writer and blogger.  My website is: https://theresecrutchermarin.com

HDSA San Francisco Bay Area AFFILIATE

Huntington’s Disease Education Day Hosted by UCSF Center of Excellence

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

              Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

UCSF Center of Excellence Team: (not all team members are shown)

Zoom Link will be emailed to the registered participants the day before the event.

         

Fundraising, HDSA San Francisco Bay Area AFFILIATE

A Virtual 10K Run & 5K Walk for Huntington’s Disease

It’s count down time!  Eighteen (18) days until the San Jose VIRTUAL Team Hope 10K Run & 5K Walk to help in the fight against Huntington’s disease.  (June 20th)

It’s FREE to join!  Donations are welcomed and appreciated!

Join, signup, here for the Run and Walk

The HDSA San Jose Team Hope 10K Run & 5K Walk is usually held at Campbell Park on the Los Gatos Creek Trail, but due to the Coronavirus, the event was changed to a VIRTUAL fundraiser.

     FUNDRAISE FOR PRIZES!

Due to the economic impact of COVID-19, we anticipate raising most of our funds through peer-to-peer fundraising.  And we want to reward you for your hard work and effort!  

Local RAFFLE: (gift cards will be mailed)

Photo by alykat on Foter.com / CC BY

RAISE $500 & YOU’LL BE ENTERED INTO A RAFFLE FOR:

$100 Gift Card for “The Table” restaurant in Willow Glen
$100 Gift Certificate from “Sprouts Farmers Market”

MORE REASONS TO RUN & WALK

To help support and reward your amazing fundraising achievement to support the HDSA mission, HDSA is launching new Incentives!

$100+: HDSA Team Hope T-Shirt

$125+: HDSA Family is Everything Brandanna (facecovering)

$500+: HDSA Team Hope Contigo Water Bottle

$1,000+: HDSA Portable Cooler Totebag

$2000+: HDSA Stadium Blanket

The T-shirts and Face coverings will be shipped on a regular basis as the fundraising goals are met.  The water bottle, cooler and stadium blanket will be shipped in December for fundraising achievements through November 30, 2020

We Can Never Lose HOPE….

 

Therese-Author

May is Huntington’s Disease Awareness Month

 

Facts about Huntington’s disease:

1. 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 … yet.

2.  Today, there are approximately 41,000 symptomatic Americans living with Huntington’s disease and more than 200,000 at-risk of inheriting HD. 10% of all HD cases are children with Juvenile HD.

3.  Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. 10% of all cases are Juvenile HD  juvenile-onset-hd/

For more information about Huntington’s disease, click here:  http://hdsa.org

We Can Never Lose Hope…

Kate Miner, her mother & 2 sisters.

Kate Miner, actress, musician, and HD advocate comes from an HD family. To read the article about her family, visit.   Kate Miner-I come from an hd family

Trey Grey, drummer, HD gene positive and HD advocate shares his story.  https://grottonetwork.com/navigate-life/health-and-wellness/huntington-disease-story/

Author Therese Crutcher-Marin

My author website:  https://theresecrutchermarin.com

Taking Care of Yourself

Be Gentle With Yourself During the Pandemic

During this unprecedented time, we need to be gentle with ourselves.  We have never experienced a pandemic and it has caused us to suffer many losses that we don’t even recognize.

Please take time to ponder about your losses.  Having to shelter in place, we have a loss of community because we’re working from home and not going to work and interacting with co-workers.  We’re not going to the gym, going out to dinner with family and friends.  When we acknowledge these losses we must be gentle with ourselves. Stress and coping with the coronavirus from the CDC

Author Therese Crutcher-Marin, HD Advocate

Grief is the normal process of reacting to a loss. The loss may be physical, social, or occupational. Emotional reactions of grief can include anger, guilt, anxiety, sadness, and despair.  Grief is expressed in many ways and it can affect your emotions, thoughts, beliefs, physical health, sense of and identity and relationships.

We Can Never Lose Hope…

My author website where my blog is generated from https://theresecrutchermarin.com To receive my weekly blog, go to the website and signup. I’ll send you the first chapter of my nonfiction book, Watching Their Dance, a poignant remembrance of a love forged in crisis.

 

 

May is HD Awareness Month

Let’s Talk About Huntington’s Disease

HELP US TURN UP THE GLOBAL VOLUME

ON HD AWARENESS!

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – Huntington’s disease (HD) impacts every family differently and it’s time the world knows our story.  For info on HD click here

Post videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families.

#LetsTalkAboutHD Resources

http://hdsa.org/this-may-letstalkabouthd/

 

We Can Never Lose Hope….

Therese’s Author Website:  https://theresecrutchermarin.comWatching the Dance Huntingtons Disease

HDSA

U.S. Nonprofits Adjust Fundraising Activities During Pandemic

“The coronavirus pandemic is forcing local nonprofits and charities to get creative with how they raise money. The charities are willing to make the adjustment to continue helping the community.”

To read the full article on this topic, visit: local/nonprofits-making-adjustments-to-raise-funds-amid-pandemic-concerns

The nonprofit my family supports, Huntington’s Disease Society of America (HDSA) is just one of the organizations making changes in their fundraising activities. Most HDSA Chapters/Affiliates, there are 100 Team Hope Walks across the U.S., are changing their Team Hope Walk, HDSA’s grassroots fundraiser, to a virtual event as is their Annual Convention on June 4-7, 2020.  Sign up for Virtual HDSA Annual Convention; it’s FREE:

                     

Please consider HDSA when making a donation to a worthy cause.  Huntington’s disease is a rare, fatal, genetic brain disorder that has symptoms like ALS, Parkinson’s and Alzheimers.  10% of all Huntington’s disease (HD) cases are children with Juvenile HD. There are 41,000 symptomatic Americans and approximately 200,000 that are at risk for HD.  There is NO CURE.  HDSAwebsite

Therese’s Author Website https://theresecrutchermarin.com

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

I’m donating 100% of the cost of my book, Watching Their Dance, to HDSA.  Since I published, three years ago, I have donated over $15,000.00.  It’s available on many book websites in new and used.  Amazon.com/Watching-Their-Dance    barnesandnoble.com/w/watching-their-dance

We Can Never Lose Hope….

Therese-Author

Author Therese Crutcher-Marin

To view my Youtube video about the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  Please click on link.

Author Therese Crutcher-Marin

youtu.be/WatchingTheirDance 

It’s a poignant remembrance of a love forged in crisis“. KIRKUS REVIEWS

Goodreads Review:  https://www.goodreads.com/review 

John and I will donate 100% of the purchase price from the nonfiction book, Watching Their Dance to the nonprofit, Huntington’s Disease Society of America (HDSA). For the past three (3) years, I have been donating $7.00 to HDSA when a book is purchased.

On my Author Website: theresecrutchermarin.com a new book is $16.99, free shipping & I’ll send 6 “Help Fight HD” wristbands. On Amazon, Prime for new book is $11.50 and used books range from $5-$11.  amazon.com/WatchingTheirDanceMarrying-Huntingtons

Author Therese Crutcher-Marin Book Signing in Auburn CA

Therese at the 2018 HDSA Annual Convention in LA.

Author Therese Crutcher-Marin

HD Advocates

Huntington’s Disease Awareness Month-Drummer Trey Gray


Sixteen (16) years ago, Trey Gray was diagnosed with Huntington’s Disease (HD) and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. Visit http://hdsa.org for information on HD.  

“I’m definitely beating the odds. And that’s a good thing,” he shares. “I want to be there for people to say, ‘You can do this. You can have an okay life!'”  

There are hero’s in our world and Trey is one that the Huntington’s disease (HD) community embraces with love.  To watch the Trey’s video, “Beating the Odds of Huntington’s Disease”, visit:  Trey’s video

Bio on Trey: Trey Gray was born in Indianapolis, IN, USA as George Lewis Gray, III to his father, George and mother, Cindy. His passion for drums started at the early age of 6 and it was then that he knew his destiny. Gray had his share of rough starts yet always stayed focus on what he loved the most.

We Can Never Lose HOPE……….   

Author Therese Crutcher-Marin