HD Research

Ask The Scientists……..Anything About Huntington’s Disease

Author Therese Crutcher-Marin

On September 8th, 2020 Drs. Ed Wild, Jeff Carroll, Rachel Harding & Sarah Hernandez answered HD Research questions live.  To watch this webinar go to:  https://youtu.be/dUsEnvPftDM

*SAVE THE DATE*: On Tuesday, December 8th at 12pm (ET), HDBuzz co-creator Dr. Jeff Carroll along with editors Dr. Rachel Harding and Dr. Sarah Hernandez will answer your Huntington’s Disease research questions. 

To register, visit https://hdsa-org.zoom.us/webinar/register/WN_JmHeoAK5QH-yWHP4ja5YoQ

We Can Never Lose HOPE……..

Family, Love

Alzheimers-Another Neurodegenerative Disease

Unfortunately, I now have experience with two (2) neurodegenerative disease; Huntington’s disease and Alzheimers.       

Author Therese Crutcher-Marin

What is Alzheimers       

What is Huntington’s disease

My family celebrated my father, James Keith Crutcher’s, 91st birthday on November 9th at Almond Gardens, a Residential Care Facility, where he now lives. Last year, the family noticed, that he was forgetting things, wasn’t keeping up the house and when he told us he wanted to move to a senior apt. complex that offered congregate meals, we moved him quickly.

I stayed a week with him in his new apartment to help with the transition.  I soon discovered, since I haven’t lived with my dad since I was 19, that he had dementia. He took many falls at the apt. after I left and had a subdural hematoma and had to have brain surgery.  He survived and John and I brought him to our home to rehab.  For (4) months, with the help of home health, he improved physically but mentally we saw a decline.  In August, he was diagnosed with Alzheimers; another cruel brain disease.

Alzheimer’s has quickly attacked my dad and my heart breaks as I watch my father slip away.  And now because of COVID-19, we cannot even visit.  I pray that one day he will not wake up and can be with my mother again in the heavens above.

We Can Never Lose HOPE…

 

 

 

 

Thankful

Celebrating Thanksgiving Will Be Different This Year

This Thanksgiving will not be like any Thanksgiving ever before. The culprit is COVID-19, the pandemic that we have been struggling with for most of 2020.

With that said, my family, Keith, Fran, Vanessa, Scott and my sister’s family have decided to all stay home.  Fran is six (6) months pregnant and it’s just not worth it because we certainly don’t want her to COVID-19.  We will look forward to 2021 Thanksgiving and the addition of our first grandchild.

It’s no doubt, we will remember this Thanksgiving for a long time.

I remind myself often, that even though it’s been a challenging time for our nation, I have many things to be thankful for; my family, democracy in our nation, friends and my health.

From my family to yours, I hope you and your family have a wonderful, peaceful Thanksgiving.

 

We Can Never Lose HOPE……………..

Love, The Marin Siblings

Haunted by Three Lovely Ladies

Lora, Cindy and Marcia Marin

Since losing my three sisters-in-law, Lora, Marcia and Cindy Marin, to Huntington’s disease complications, at young ages, I am haunted by their memory.  John and I were by each of his three sisters’ side while they struggled with Huntington’s disease for 24 years. These experiences are embedded in my mind, heart and soul.

Lora, Cindy, Marcia Marin

Most people associate the word “haunt” as a bad, troubling experience, but to me “haunt” is: to recur persistently to the consciousness of; remain with; not easily forgotten.  I’m no psychologist but I believe I consciously chose to have Lora, Marcia and Cindy remain in my heart and, yes, creep into my consciousness everyday.  I believe this is my way of keeping their memory alive, honoring them because they tremendously influenced my life.

Maybe one day, after I’ve done my best to help the nonprofit, Huntington’s Disease Society of America (HDSA), these ladies will not live in the fore front of my mind and I will find peace knowing I’ve done everything I could to remember them. 

Author Therese Crutcher-Marin

We Can Never Lose HOPE……

To receive the first chapter of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, visit my author website Author Website  and sign up for my blog and I’ll email the chapter to you.  (signup is on right side of page)

 

 

HD Research

HSG-Clinical Research Network Focused Exclusively on HD

Since I’m strongly connected to the nonprofit, Huntington’s Disease Society of America (HDSA), I did not know much about The Huntington Study Group (HSG) which is a clinical research network focused exclusively on Huntington’s Disease. https://huntingtonstudygroup.org/

Despite the COVID-19 pandemic, scientists, clinicians and industry experts are still meeting (albeit online) to discuss the latest research in HD drug discovery and the findings from HD clinical trials to continue to push HD research forward.

On October 29th, the HSG began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the recent developments in HD drug discovery. huntingtonstudygroup.org/about/our-annual-meeting/

To read about the HSG annual conference in plain language visit:         

https://en.hdbuzz.net/295

Author Therese Crutcher-Marin

 

We Can Never Lose HOPE………..

Family, Love

What Do You Remember About Your Grandmother(s)?

I was blessed to have both of my grandmothers involved in my life and I have wonderful memories of them.  Both of my grandmothers, Christina Mary (Mages) Crutcher and Celena Barbara (Gable) McKibben were loving woman, who unfortunately, didn’t marry nice men.   

Christina Mary (Mages) Crutcher married at 17 and was a mother at 18 and her first granddaughter was born when she was 41.  What I remember about her is, she would take one of us, I have three (3) sisters, for a weekend and spoil us to death; we’d go to the movies and have popcorn and candy, play cards for hours and watch Let’s Make a Deal on TV.  These were special one-on-one time I had with her.     

Celena Barbara (Gable) McKibben had a tough life.  She and my grandfather split early in the marriage and didn’t divorce for many years.  My Grandmother had to work until she was in her late 70’s; first as a housemother to nursing students at St. Joseph Hospital and later as a companion to elderly women, living with them through the week and then living with one of her children on the weekends.  What I remember about her is, the hugs, smiles and giving us a quarter out of her little change purse when my sisters and I were going to TG&Y to buy candy.  She was a very giving, loving woman and her family was everything to her.

We Can Never Lose HOPE……….

Author Therese Crutcher-Marin

 

Taking Care of Yourself

An All Level PI-YO Class For the Huntington’s Disease Community

    

Have a glass of wine and experience a relaxing, gentle PI-YO (pilates/yoga) class.  You deserve it.  Kat Fillare, pilates instructor, and Amanda Strewsbury, yoga instructor, will lead you through a calming hour and a half.

Register here:  http://greaterla.hdsa.org/stretch

While you enjoy you will be helping in the fight against Huntington’s disease (HD); a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time.  A child with a parent with HD have a 50/50 chance of inheriting the mutated huntingtin’s gene that causes the disease.

We Can Never Lose HOPE………..

Author Therese Crutcher-Marin

My Author Website:  https://theresecrutchermarin.com   

Family

Happy Birthday to My 91 Year Old Father-James Keith Crutcher

Happy Birthday to my my father, James Keith Crutcher, who was born at home on Saturday, November 9, 1929 in Kansas City, Kansas. 

Grandmother, Chris Crutcher

I love you dad, and I’m blessed to have you in my life for all these years.

From what my Grandmother Chris Crutcher told me, who gave birth to my dad having just turned 18 two weeks prior, that it was a very difficult birth.  My father would be an only child until his sister, Trina, was born when my dad was 18. (Same parents)

John and I named our son, Keith, because I always told my parents, if I had a son, I would give him dad’s middle name.  My parents had four daughters.

   

Jim, Trina & Ellen

I sure HOPE I have his genes.  My grandmother, Chris Crutcher, lived until she was 102 and lived independently until the last eight months of her life.   

We Can Never Lose HOPE…………..

 

 

 

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…….

 

 

Huntington's Disease

The Are No Words…………

There are no words when talking about Huntington’s disease (HD) and Juvenile Huntington’s disease and the devastation it causes in a HD family for generations.  It is truly the cruelest disease on the planet and causes great suffering and anxiety that can only be imaged if it is in your family.

Because children from a parent with HD have a 50/50 chance of inheriting the disease, approximately 200,000-250,000 live at risk for the disease.  Since it is a rare disease, 41,000 American’s live with the disease and, unfortunately, it is progressive and has a 10-20 year prognosis. 

A HD family deals with high emotional stress, financial devastation, anticipator grief for years, and multiple family members may have the disease at the same time. 

 

Author Therese Crutcher-Marin

The good news is that there are promising clinical trials being conducted around the world.  I’m an Huntington’s disease advocate and my plea to you today is to pray the trials will have positive outcomes, and the  U.S. Orphan Drug Act (ODA) will be requested and the FDA (Food and Drug Administration) will quickly approve it.

We Can Never Lose HOPE….