I believe the San Francisco Bay Area, with 7 million people, deserved to have a HDSA Chapter/Affiliate to support the local Huntington’s disease families.
I also had another reason in mind. Over the past three years, I’ve been bugging John to move to the San Francisco Bay Area to be closer to our children. I knew one day John would relent and he did last summer, when it was a brutally hot summer in Auburn CA.
Keith and Fran had their first child four months ago and will soon be in a home in Novato CA to grow their family. Vanessa and Scott bought a home in Petaluma, north San Francisco, and love it there.
So, we sold our house in Auburn CA and are building a 1200 sq. ft. home on Vanessa and Scott’s property in Petaluma and are temporarily living in our cabin in Lake Tahoe while it is being built.
We Can Never Lose HOPE….
Author Therese Crutcher-Marin
I’m a HD, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.
There is a lot of talk in the news these days about mental health or mental illnesses. Naomi Osaka, tennis player, was in the news recently withdrawing from the French Open, citing concerns for her mental health.
Healthcare professionals and myself believe the brain is an organ in our body and when it becomes ill, it needs to be addressed. We need to fight the stigma of mental illness. Over 24 years, I watched my three sisters-in-law struggle with Huntington’s disease , and I carried anticipatory grief in my heart which lead to complicated grief after their death. I saw a psychologist in my community, for 10 years who helped me deal with the fear and sadness I carried in my heart.
John and I have been helping Keith and Fran, with our three and a half month old granddaughter, Marlena, since Fran went back to work and still works remotely.
Last week as I sat on the couch holding her, amazed at her progress in just three months, I reminded myself to stay present, relaxing in the beauty of the moment. I consciously did not let my mind wander, like it usually does, but kept my focus on Marlena. As I focused my awareness on the present moment, my breathe slowed, my shoulders relaxed and I felt Marlena’s body relax against me. I breathed in her baby smell, kissed her cheek and squeezed her a little tighter, acknowledging the many blessings I have presently right in front of me.
One of the best tools to practice staying present is mindfulness. Mindfulness is essentially an accepting, open, non-judgmental and curious focus on one’s emotional, cognitive and sensory experience in the present moment. Simply put, mindfulness is present moment self-awareness.
It takes some concentration and the rewards you reap are wonderful.
We Can Never Lose HOPE….
I’m a Huntington’s Disease(HD) Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. My Author/HD Advocate Website
Author Therese Crutcher-Marin
Please make a donation to the nonprofit, Huntington’s Disease Society of America. You can help us in the fight to eradicate this horrific disease so no one has to suffer anymore. Donate here.
My daughter, Vanessa, is a gifted artist and a few years ago she gave me a wonderful gift.
My husband, John, has Huntington’s Disease (HD) in his family. Since his mother had the disease, he and his three (3) sisters we at risk for this fatal, rare, genetic brain disorder that has NO CURE. 41,000 Americans have the disease and approximately 200,000 live at risk.
The four (4) siblings were very close, so as each sister developed HD symptoms we moved them close to support them in their HD journey. Over 24 years, our children, Keith and Vanessa, witnessed the disease progression in their aunts, starting at very young ages. Needless to say, it was difficult for all of us.
A few years ago, Vanessa painted a picture that soothed my soul and made the hole in my heart a little smaller. The picture is a mural on the wall in my home office. It depicts three figures, I see angels, traveling to heaven.
Because Vanessa was emotionally affected by the aunts HD experience, I believe, she painted the mural for her own mental health and took another step to always remember them; she tattooed the angels on her back.
Four (4) years to the day, John and I took off on a book tour, in our RV, to promote the nonfiction book I had just published,Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.
Before we headed East on I80, I had mapped out nine (9) Huntington’s Disease Society of America (HDSA) Team Hope Walks, in the Midwest, that we could attend over a period of three (3) months. I had talked to the coordinator of each Walk, to make sure it was ok, and was welcomed with open arms. When the walk was concluded, I calculated the proceeds from books sold that day, and wrote a check to the HDSA Chapter/Affiliate hosting the event.
After each Walk, my heart was filled with hope and love, and I was inspired by the strength I witnessed in the HD families I had the honor to meet.
In every book I sold, I wrote, We Can Never Lose HOPE….
To say “I’m grateful” is an understatement, and quite frankly, there isn’t a word that truly expresses the thankfulness I carry in my heart everyday.
Why am I appreciative? In 2016, my husband, John, decided he wanted to to be genetic tested to find out his gene status for Huntington’s disease (HD). Since HD is genetic, a negative test result meant he could not pass the mutated gene on to his children.
Our daughter Vanessa Garrett
Fast forward to 2021. In February, our son, Keith, and his wife, Fran welcomed their first child, our first grandchild, into a familyFREE of HD.
I volunteer for the nonprofit, HDSA, and their Vision Statement is, “A World FREE of HD“.
For 38 years, I worried about John and our children, praying they would be spared. Now, I sleep soundly at night and thank the Higher Power for this gift.
As we celebrate Huntington’s Disease Awareness Month, I reflect on the Marin Family’s Huntington’s disease journey through the generations. John’s mother side of the family, the Cahoon’s, battled Huntington’s disease (HD) and it’s overwhelming how many members of this family were affected.
HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s disease. There is NO CURE and when a parent has HD, the children have a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.
The Cahoon family history of Huntington’s disease dates back at least 4 generations.
John’s great grandfather- Wilbert D. Cahoon
John’s grandfather-Charles Wilbur Cahoon
John’s mother-Phyllis Iva (Cahoon) Marin
Lora, Cindy, Marcia Marin
John’s three sisters: Lora, Marcia and Cindy
John tested in 2016 at the Center of Excellence at UC Davis Medical Center in Sacramento. He tested anonymously and was negative for the mutated huntingtin gene. His three sisters didn’t have children and with John negative results, Huntington’s disease is no longer in our family.
The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2021 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease. Huntington’s disease (HD) is a rare, hereditary neurodegenerative disorder currently affecting approximately 41,000 Americans. More About HD
The purpose of this fellowship program is two-fold. First, to attract the brightest young scientists into the field of Huntington’s disease research; and second, to facilitate meaningful HD research to clarify the biological mechanisms underlying HD pathology.
After review by HDSA’s Scientific Advisory Board, two young scientists were awarded 2021 Donald A. King Summer Research Fellowships.
Ratnesh Kesineni (University of Central Florida) will be mentored by former HDSA Human Biology Fellow Dr. Amber Southwell and will explore a potential link between biological age and aggregation of misfolded mutant huntingtin (mHTT) for potential therapeutic targeting.
Russell Wells (Whitworth University) will work with Michael Sardinia, PhD, DVM, to study the effects of dihexa, a small molecule that has previously shown positive effects in Alzheimer’s and Parkinson’s disease models, for the treatment of Huntington’s disease phenotypes in mice models.
This year, the nonprofit, Huntington’s Disease Society of America, will be launching two new initiatives during Huntington’s Disease Awareness Month. The 31 Days, 31 Stories video campaign will release a different HD story each day across HDSA’s social media channels. HDSA will also share the first-ever Athletes vs. HD sports memorabilia auction which will open on May 1st and close on May 15th (International HD Awareness Day).