Every day families around the world are confronted with challenges in their lives; a devastating Huntington’s disease (HD) diagnosis, a cancer diagnosis, a challenging medical diagnosis, an autistic child, a miscarriage, a significant death, divorce and many other threats. I don’t know of a family that has not had one at some time in their life. With that said, I took a risk for LOVE with my then boyfriend John, who I ultimately married, with an unknown gene status for Huntington’s disease. I decided that I was willing to take that risk because I believed, “Love that ‘endures all things’ islove that hopes in the face of circumstances that often seem dark”.
John and I had dark times, walking beside Lora, Marcia and Cindy, John’s three sisters, on their HD journey for over 24 years. Plus, living at risk for HD is stressful and can challenge a relationship, but John and showed the world that love can conquer any hardships, difficulties, and challenges.
It’s a shock when families learn that Huntington’s disease is in their family. I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.
HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region. Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.
I’m a Huntington’s disease (HD) advocate because my three sisters-in-law, Lora, Marcia and Cindy were victims of the cruelest disease on the planet. I hope to witness a therapy or even a cure in my lifetime so I chose to be involved with the nonprofit, Huntington’s Disease Society of America (HDSA) in this quest.
A quote from Dr. Marie Didiot, grant recipient of the Human Biology Project. “Fundraising is one of the major challenges in research. Providing awards in the HD community, as does HDSA, is encouraging researchers to focus on HD and attracted more students with new potential and skills.“
Tomorrow is a day where folks in the United States stop and give thanks with family and friends.
In January 2016,Giving Thanks took on a new, deeper meaning for me. That was when John tested NEGATIVE for inheriting the mutated huntingtin gene, that causes Huntington’s disease, from his mother, Phyllis Iva (Cahoon) Marin. John tested anonymously at HDSAUC Davis Center of Excellencein Sacramento CA.
Lora, Cindy and Marcia Marin
Even though it was stressful waiting for six weeks for the results, when we received the news we were thrilled, but it was bitter sweet as we had lost John’s three sisters, Lora, Marcia and Cindy from Huntington’s disease complications.
Have a wonderful Thanksgiving Day and for Huntington’s disease families, let us be thankful and grateful we live in a time when 50 companies around the world are working on therapies for the cruelest disease on the planet……..Huntington’s disease and Juvenile Huntington’s disease.
The Holiday Season is here so when making purchases on Amazon, use AmazonSmile and support your favorite charitable organization every time you shop. And, we all know we shop on Amazon.
Using AmazonSmile is FREEmoney to the charity. Chose the charity close to your heart. It’s easy and takes NO EFFORT on your part. Sign Up here and select your charity. My charity is Huntington’s Disease Society of America National Headquarters.
Shoppers who start at smile.amazon will find the same Amazon they know and love, with the added bonus that Amazon will donate 0.5% of the price of eligible purchases to the charity of your choice.
Okay, Huntington’s Disease (HD) community around the world, here is great news!
The following information has me so excited that I am shouting it out to the community because there are 45+ key companies continuously working towards developing 50+ Huntington’s Disease treatment therapies.
This is huge and my HOPE has escalated beyond my wildest dreams because in the 44 years that I have known about Huntington’s disease, I believe this decade is when therapies will be sanctioned by the FDA in the United States and other governing bodies around the world will do the same.
It’s that time of the year again where Amaryllis Flowers for the upcoming Holiday are available from the nonprofit, Huntington’s Disease Society of America (HDSA). The flower kit is a wonderful gift for the Holidays plus raises dollars for HDSA.
After I married John, taking the biggest gamble of my life, every decision John and I made together, a little voice in the back of my mind always whispered, “If John has Huntington’s disease (HD), what is your back up plan?” Since I struggle with Obsessive Compulsive Disorder (OCD) and like to be in control, after big decisions were made, I secretly created a backup plan or contingency strategy; an alternative which can be used if something goes wrong with the main plan; a recourse.
Early in our marriage, Huntington’s disease (HD) didn’t impact our lives; the Marin siblings were young and HD seemed so far away. It was only when my sisters-in-law, Lora, Marcia and Cindy started showing symptoms of the disease that decisions, for me, became more difficult.
As a young couple, starting our lives together, after two years of marriage John and I decided to purchase a home. When we were looking, my mind raced with this question: “If John becomes disabled, because of HD, can I make the mortgage payments on my salary?” To have some control, I took out a Mortgage Insurance Policy, that paid the mortgage if John was deemed disabled.
HD families struggle with many complicated decisions throughout their lives as John and I did. We make the best decision based on the information we have at the time, and having a backup plan provided me with some control and calmed my fears.
To foster cutting-edge Huntington’s disease (HD) drug discovery research, there is great need for brain donations from HD families. A brain donation is a gift of knowledge that is essential to enhance the understanding of HD. Although deciding to become a prospective brain donor can be difficult, signing up is a simple process. Any person 18 years of age or older can complete the “Brain Donation Registration.”
One driving force behind research on the human brain is the availability of human brain tissue. A brain donation is an invaluable gift anyone can make to further how researchers understand the brain and different diseases that affect it, like HD. Learn more about brain donation on Huntington’s Disease Society of America’s website, here.
My two sisters-in-law, Marcia and Cindy, both chose to donate brain tissue to Harvard Brain Bank after they died. They both were altruistic and wanted to help find a cure for HD even though they would not benefit from it.