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Huntington's Disease

A Negative Test for Huntington’s Disease

HDSA 2019 Convention

Five years ago, in December 2015, John and I visited the HDSA UC Davis HDSA Center of Excellence to start the process to learn John’s gene status for Huntington’s disease.  Mara Sifry-Platt, genetic counselor recorded family history, Dr. Vicki Wheelock physically examined John and a psychiatrist evaluated his mental health.      

John and I had lived with HOPE since 1979, when Lora, Marcia and Cindy, discovered their mother had Huntington’s disease and they each had a 5/50 chance on inheriting the  mutated huntingtin gene.             

Why did John decide to be tested at this time, you ask?  Both of our children, Keith and Vanessa, had become engaged and John felt he owned it to them to know his gene status because it would impact their lives.  HDSA the nonprofit that is fighting Huntington’s disease 

On January 16, 2016, after a six (6) week wait for the results, John and I sat anxiously in a room at UC Davis Center of Excellence holding hands.  We held our breath as Dr. Wheelock gave us the answer we had hoped for.  John was negative!!!!!  It was the happiest day of our lives!

We Can Never Lose HOPE…….

 

 

 

Grief

The U.S. Is Living In Perpetual Grief

Author Therese Crutcher-Marin, HD Advocate

Since the pandemic began, last March, I have watched the news every morning and I’ve become obsessed with the growing number of deaths in the U.S.  As I’ve watched the number grow from one day to the next, my heart hurts for loved ones who died alone in a hospital.

Over the past few months, the Lester Holt on NBC has coined a new phrase; perpetual grief; indefinitely long-continued perpetual sadnessTypes of Grief and Loss

For ten months, as the death rate rose, we could not see this pandemic ending. Now there is light at the end of the tunnel with the vaccines being rolled out.  I’m grateful we can see the end but I still get up in the morning and look to see how many died the day before and I feel I’m still living in perpetual griefland. Goodreads.com “Griefland” 

Grief is real and can affect your health if left unchecked.  Grief increases inflammation, which can worsen health problems you already have and cause new ones. It batters the immune system, leaving you depleted and vulnerable to infection. The heartbreak of grief can increase blood pressure and the risk of blood clots.  How to Cope with Physical Symptoms of Grief

We Can Never Lose HOPE……

Huntington’s disease (HD) families are already living in anticipatory grief when a loved one is struggling with HD.  Perpetual grief is just another layer of grief for families on top of the sadness of having Huntington’s disease in their family.  What is Huntington’s Disease 

 

 

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HD Advocates

HDSA Pacific Region Throws Down the Gauntlet

Anita Dominguez and Denny Cone, HDSA Pacific Regional Officer and Staff, have thrown down the gauntlet challenging Chapters/Affiliates, in the region, to see who can recruit the highest number of new volunteers in six weeks beginning January 18th, 2021.

The challenge for a Recruitment Blitz may be focused on one specific volunteer need for Teams, Sponsors or Participants or it could be all encompassing to recruit for all areas of Team Hope Walk.  Recruitment for volunteers to work on Committees and to fill board positions are also important to the Chapters/Affiliates. About the Pacific Region

The San Francisco Bay Area Affiliate team members accept the challenge and are busy planning the strategies to win this challenge!  In California, the SF Affiliate extends from Santa Rosa to Gilroy, including the city of San Francisco, Oakland, and San Jose.

If you are interested in volunteering in the Bay Area, please visit https://theresecrutchermarin.com/volunteerism/

The following is a list of the Chapter/Affiliates that will be competing against one another.

  • Arizona Chapter
  • Las Vegas Affiliate
  • Los Angeles Chapter
  • Northern California Chapter
  • Orange County Chapter
  • Rocky Mountain Chapter
  • San Diego Chapter
  • San Francisco Affiliate
  • Southern Idaho Affiliate
  • Utah Chapter
  • Washington State Chapter

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger.  Visit my  Author Website

HD Advocates, HDSA San Francisco Bay Area AFFILIATE

HDSA San Francisco Bay Area Affiliate Celebrates One Year

The San Francisco Bay Area Affiliate, one of the 55 Chapters/Affiliates across the U.S., of the nonprofit, Huntington’s Disease Society of America,  is celebrating its first year of operation.  Despite the pandemic, team members shifted to zoom monthly meetings, virtual events and have developed a Strategic Plan for 2021 to help in the fight against Huntington’s disease, provide Education Days at Stanford & UCSF Center of Excellence, organize outreach projects so HD families can find services to help their family.   

I’m Therese Crutcher-Marin, the Chair for the Affiliate.  Amy Fedele 

HD Advocate Amy Fedele

is co-chair and Cole Holderman is secretary. 

On Saturday, January 11, 2020, the first Affiliate meeting was held at UCSF with 22 attending from Genetech, HOPES, community folks, UCSF & Stanford Centers of Excellence, and HDSA social workers/staff.  

Author Therese Crutcher-Marin, HD Advocate

I want to thank everyone involved in the Affiliate in 2020 for their time and dedication and I’m excited to kickoff 2021 at our first meeting on Wednesday, January 6, 2021.  At this first meeting of the year, we’ll be discussing the strategies to implement the 2021 Strategic Plan to outreach to the HD community in the Bay Area.  

We Can Never Lose HOPE………

Visit my My Author Website and check out my nonfiction  book,  Watching Their Dance.

 

Hope, Kindness, Love

Am I Ever Happy to Celebrate the New Year!

From my family to yours, HAPPY NEW YEAR!

As a person who sees the glass half full instead of half empty, I’m looking for a return to some sense of normality and to having access to the vaccine and being able to relax and be hopeful. It will be a relief to see the job market rebound.  Bye, bye 2020 and welcome 2021.

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, volunteer and Chair for the Huntington’sDisease Society of America (HDSA) San Francisco Bay Area Affiliate.

My Author Website 

We Can Never Lose HOPE……..

Hope, Mindful

COVID-19 Reminds Me To Be Mindful

Author Therese Crutcher-Marin

Needless to say, I don’t think anyone would disagree that 2020 was a year like we have never experienced before.  The number of Americans dying from Coronavirus is staggering.

  As of today, December 30th, 2020 over 339,000 Americans have died a horrible death and more than likely, died alone.

Since my family was at risk for the cruelest disease on the planet, Huntington’s Disease, a rare, fatal, genetic brain disorder with NO CURE, John and I always lived our lives MINDFULLY and TOOK NOTHING FOR GRANTED. What is Mindfulness?

This unprecedented year, has reinforced the importance to live in the moment, appreciate and enjoy the day.  California is in such a bad way with COVID-19 that John and I have not seen our children much this year.  I cherish them more and tell them I love them often.  Also, during the pandemic, I have felt closer to my sisters, nieces and nephews and believe I understand them more than I did before.

I pray this will be the last pandemic the world will have experience, for awhile, and I hope we have learned from it.

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

I’m an Advocate for Huntington’s disease, a volunteer and Chair for the HDSA San Francisco Bay Area Affiliate.

Author Website I’m the author of the nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

HDSA, HDSA San Francisco Bay Area AFFILIATE

Make An End of Year Donation to Huntington’s Disease Society of America

Author Therese Crutcher-Marin, HD Advocate

I’ve been blogging for five (5) and for the first time I’m asking American’s, directly from my heart to yours, to donate to the nonprofit, Huntington’s Disease Society of America.  HDSA Organization  HDSA is a small nonprofit, 90% volunteer based, and no less important than the American Cancer Society, MS Society, Alzheimer’s Assoc. and Parkinson’s Foundation.  Huntington’s Disease (HD) families suffer like families of these diseases.

HD is one of 7,000 Rare Diseases in the world with NO CURE.  In the U.S., HD affects a small population; approximately 41,000 Americans live the disease and 200,000 live at risk.  I’m a volunteer and Chair for HDSA San Francisco Bay Area Affiliate, having lost my three (3) sisters-in-law to HD complications.  

I’m reaching out to you because it has been an unusual year with the pandemic which has affected everything in our lives.   Please consider making your year-end donation to HDSA so the nonprofit can continue supporting Huntington’s disease (HD) families across the U.S.  DONATE TO HDSA

Resources/programs funded by HDSA are: 50 Centers of Excellence (HD) clinics, local HD support groups, Disability Chats, Telehealth Program, National Youth Alliance Program, education and research.  HDSA also funds two yearly fellowships, Berman Topper Fellowship   Donald King Summer Research Fellowship , and the Human Biology Project.

HDSA has high ratings as a nonprofit.  Please see HDSA’s Charity Navigator ratings.

To make a donation, please visit:  HDSA Donation Page  

Thank you in advance for your generosity.

Below are HDSA accomplishments:

We Can Never Lose HOPE……………

 

 

 

 

Family, Helping Others

Christmas Around the World

                   From my family to yours, Merry Christmas!        

Author Therese Crutcher-Marin

Even though we can’t, or shouldn’t, celebrate the birth of Christ with family and friends, I believe it’s a small price we pay to heal the world from the COVID-19 pandemic.  This is a sacrifice we, as human beings, do for one another. 

I’m reminded that, as human beings, we all share the same sadness, the same hopes, the same potential. The pandemic has showed us how interdependent we are: what happens to one person can soon affect many others, even on the far side of our planet.

John and I are staying home for Christmas, like we did for Thanksgiving, even though we’re dying to see our children and friends.  I’ve taken to remembering Christmas’s past with family and those memories will get me through this Holiday season.

The pictures are of from 2018 Christmas in Cortona Italy with Family.

    

Please have a safe and peaceful Christmas.

We Can Never Lose HOPE…..

Author Website:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin Book Signing in Auburn CA

 

Storytelling

An Amaryllis Christmas Story

Author Therese Crutcher-Marin

I’m sharing a story about a friend who purchased Huntington’s Disease Society of America (HDSA) Amaryllis Holiday Kits and sent them to her family to stay connected during the holidays.  The amaryllis commonly symbolizes strength and determination. The Huntington’s disease (HD) community has adopted this flower to represent hope and celebrate the advancements in HD research. HDSA Annual Event 

HD is a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimers synonymously and there is NO CUREWhat is HD 

The bulbs are bringing fun and connectedness to the ladies in her family at this somewhat isolating holiday time. She ordered 7 bulbs and mailed them to San Diego (2 nieces), Modesto (2 sisters), Colorado (daughter), near Fresno (daughter) and she kept one.   They all planted on December 1 and named their bulbs.  (One is Minnie, one is Amy, etc. One is even Pancake because it sits on a shelf next to the pancake mix.) 

Every Sunday they measure the heights of their stalks, send each other a picture, and the race is on!  The bulb owner who ends up with the tallest stalk when there is a full bloom is the winner of a Cold Stone gift card. They are finding it amazing how different the growth patterns are when they all were planted at the same time.

My friend feels her family challenge is a bit silly – but they are having great fun staying connected over the holiday in this way.  She is already telling herself to remember it for next year again!

We Can Never Lose HOPE……

Thank you to my friend for supporting HDSA in the fight against his horrific disease and finding a unique way to connect with loved ones. 

The Non Fiction Book

Give a Book for Christmas That Supports a Cause

Author Therese Crutcher-Marin

Merry Christmas and Good Tidings to you and your family.

Books are always a great gift especially when it supports a cause.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s Disease (HD), is John and my love story while living in the shadow of Huntington’s disease. Book Reviews  

Lora, Cindy, Marcia Marin

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimer’s and Parkinson synonymously and has NO CURE100% of the proceeds from the sale of the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against HD.  

The incentive to write my story was to honor my three sisters-in-law, Lora, Marcia and Cindy, who lost their lives to HD complications. Furthermore, the book heightens HD awareness, and, currently, 41,000 Americans live with the disease and over 200,000 live at risk. 

With that said, I ask for your Help in the Fight Against Huntington’s Disease by purchasing my nonfiction Watching the Dance Huntingtons Diseasebook.  Amazon-Watching-Their-Dance      BarnesandNoble-Watching-Their-Dance    thriftbooks.com   Author website: e-file $6.99purchase-book

I believe the world needs to hear HD families stories.

We Can Never Lose HOPE…………