April is National Volunteer Month, when we celebrate the work that volunteers do year-round. April 10-16 is National Volunteer Week; organizations across the country will recognize their volunteers for helping them achieve their mission.
The mission of Huntington’s Disease Society of America (HDSA) is, “Dedicated to improving the lives of everyone affected by Huntington’s Disease (HD) and their families“.
It takes many hands to continuously fulfill HDSA’s mission and as Chair for HDSA San Francisco Bay Area Affiliate, I’m honored to work by the side of many dedicated volunteers, in the San Francisco Bay Area, who work tirelessly in the fight against Huntington’s disease.
Huntington’s Disease, the cruelest disease on the planet, has NO CURE and affects families for generations. Because it is genetic, when a child has a parent with the disease, they are “at risk” and have a 50/50 chance of inheriting the mutated huntingin gene that causes the disease. What is Huntington’s disease
We Can Never Lose HOPE….
Author Therese Crutcher-Marin
I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.
The Pandemic continues to confine us to our home waiting for our turn to receive the vaccination, so I want to share with you my exercise routine that John and I do about 4-5 times a week.
I hope you will consider incorporating in your day, stretching and getting your heart rate up by marching in place, as an example. It truly helps you stay positive, feel good about yourself, and uplifts you mentally.
I’m not an exercise expert, I’m giving some suggestions to help you through your day at home.
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.
After I returned from the 2019 Huntington’s Disease Society of America Convention in Boston in late June, I began wondering how and what the partners (sponsors) of the event contribute to the Huntington’s disease community.
Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time. There is NO CURE.
On the back of the Convention Guide Book is a list of some of the partners. Today I’ll post about LUNDBECK. lundbeck.com/us/about-us
Insight from Lundbeck’s Patient-Focused Approach to Business:
“Lundbeck offers financial support, and does it with a real understanding of what patient communities value and need: Patient groups are often strained for financial resources, which is why it’s not only important that we offer support generously, but in places where it can make the biggest impact. From many years of listening to patients, we have seen time and again how important it is for people to be able to connect with each other at patient group events and conventions. That’s why we introduced annual scholarships to help patients and their families attend the Huntington’s Disease Society of America (HDSA) Convention.”
Thank you to Lundbeck Pharmaceutical Company for offering scholarships to Huntington’s disease (HD) families so they are able attend the Annual HDSA Convention. It’s so important for HD families to connect with the HD community so they do not feel alone.
Finding your passion, and acting on it, I believe, is important to one’s happiness. Maybe it’s painting, writing, running, mentoring young people, teaching, helping the homeless, delivering meals to the elderly, volunteering for a your favorite charity, rescuing animals; anything that makes your heart and soul happy.
My passion is helping people. Most of my career was in healthcare, the last 10 years in a community hospice program. Focusing on a terminally ill patient’s pain and symptoms, allowing them to have the highest quality to their life for as long as possible fed my heart and soul. What is Hospice Care
Find your passion and incorporate it into your life. We live very busy lives, and adding a hour or two a week of your passion, can enrich your life.Inspirational-quotes-on-passion
We Can Never Lose HOPE………
100% of the profit from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which was the profit since the book was published in April 2017. amazon.com/Watching-Their-Dance
I post quite often about KINDNESS on my personal Facebook Wall, as a reminder to myself and others. Every Monday, John and I volunteer at a local Homeless Center to help and show kindness to those who are less fortunate than us. I am humbled by these folks I interview because of their strength and resilience. Many of them did not choose to be homeless; bad choices, drugs, alcohol lead them down a slippery slope and, for many reasons, they are unable to change their situation.
The picture of the young man is a client I usually interview on Monday’s. I won’t mention his name for privacy reasons. He did allow me to take his picture and share some things about himself and some of his goals.
He recognizes he has a problem with alcohol, wants help because he knows where the alcohol will ultimately lead him. He used to be married, has several children, has set a goal to be sober and to reconcile with his ex-wife and work towards gaining visitation rights again.
When I don’t see him, I become concerned and I pray he is okay. After our volunteer day on Monday, John and I usually talk at dinner about the day. When I bring up this young man and my concerns, John says, “We can only do so much, Therese.” And, in my mind I know that, but my heart says something different.
John and I volunteer on Monday’s at a Homeless Center in Auburn; I interview the clients and John is the shower guy. After being interviewed, they pick out clean clothes then go to the shower. (There are 4 shower stalls and John cleans them after every client) https://www.aubsda.org/
Yesterday, the center held a Thanksgiving Dinner for our clients. It was awesome and I have never seen so many smiles at one time on their faces.
So, two weeks before the dinner, and in order to know how much food we needed, the interviewers, that’s me, asked clients if they would attend the dinner.
It nearly broke my heart when many of them nodded, then dropped their head and said, “Yes, thank you, thank you. I don’t have anywhere to go to have a Thanksgiving meal”.
I’m posting this puzzle picture because it portrays how the homeless feel. Forsaken, forgotten, lost, abandoned, isolated. John and I feel that the homeless are part of our community, like a piece in a puzzle, and if we can make one day a little bit better for them, then we have helped our fellowman.
If you are interested in volunteering for the Huntington’s Disease Society of America Northern California Chapter, there are many opportunities where you can help. http://northernca.hdsa.org/
Here are a few ways you can contribute to improving the lives of individuals and families affected by Huntington’s disease (HD):
* Participate in the planning and execution of Chapter events: Annual Team Hope Walk, annual Chapter Convention, and Kaiser Permanente Education Days * Provide transportation to HD families * Provide light housekeeping/childcare for HD families *Participate in clinical trials and observational studies * Make phone calls to donors to thank them for their contribution * Serve on the HDSA Northern California Chapter Board of Directors *Post on NorCal Chapter social media platforms: Facebook, Twitter, Instagram *Assist with marketing/publicity/outreach
Today, folks dealing with Huntington’s disease have many resources available; more than John and I did in the 1980’s and 1990’s. Don’t get me wrong, HD is still the cruelest disease on the planet, but HD families and their loved ones are not as isolated as we felt. Families have access to social workers, neurologists, HD clinics, information, support groups, conventions, Facebook Support Groups, webinars, and have opportunities to participate in studies and clinical trials to help research move forward. In the area of care, Huntington’s Disease Society of America has created a national network of resources and referrals that are unmatched by any other HD organization. http://www.hdsa.org
As I’ve traveled the Midwest this summer and attended HD Support Groups, Hope Walks, conventions, education days, I have seen the positive affect the availability of support has on HD families. Connecting with people who are living the same life as you is helpful and comforting.
In the 1980’s, when two of my sisters-in-law began showing symptoms, John and I felt alone, isolated without a support system. Lora, John’s oldest sister, showed psychiatric symptoms around 1984 and drank herself to death by 1989. Marcia was diagnosed by neurologists at UC San Francisco Medical Center in 1986 and Cindy exhibited symptoms in 1992. There were no support groups, Hope Walks or even a neurologist in the Sacramento California area who specialized in Huntington’s disease.
Basically, John and I learned as each sister showed symptoms, did the best we could and held on to each other for support. I also had a counselor for many years who helped me through the anticipatory grief I experienced for 25 years as each sister was diagnosed and Huntington’s disease slowly stole them from us.
Therese remembers her sisters-in-law in her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds from her book is being donated to HDSA in the U.S. and HD organizations around the world.
Kate Miner, who wrote a book jacket comment for my book cover, was gracious enough to allow me to interview her. Of course, some of the questions are about her family’s experience with Huntington’s disease but others are about her life as an actress and musician.
Q 1) Tell us how you got started in acting and about your Indie Rock Band, Miner. I started doing theater in high school and was approached by a talent scout who saw a performance of Guy and Dolls that I was in. A few years later I moved to Los Angeles for college and started auditioning all the time. I was fortunate enough for my passion to turn into a career.
I didn’t start playing music until 2012 when my husband was working on a new project that would turn into Miner. He needed female vocals and knew I’d done musical theater growing up so he had me sing on it. The songs he released online went viral and he was like “how quick can you learn to play mandolin?” I found I really enjoyed playing music and songwriting. It was a surprise to both of us how naturally it all came together and how much we enjoyed writing together.
Q 2) When did you discover that your family was affected by HD? In 2014 while I was on a national tour with Miner my parents called me and told me my aunt had HD. I didn’t really understand what that meant for our family until we got off the phone and I started researching online.
Q 3) Did you take a test for HD? I did. I’m negative. Both of my sisters are positive. We got our results one day apart. If I could trade places with either one of them I would. They are the best people I know in this world and my best friends.
Q 4) Tell us about your involvement in Freeze HD and other ways you are trying to educate people about the disease. We decided to host a fundraiser as a sort of coming out party to our family and friends many of whom, like us, had no idea what HD was before it affected our family. We rented out a fun music venue in Echo Park called The Bootleg Theater and proceeded to raise over 200k. The event brought out big names like Academy Award winner Annette Bening and an array of television stars.
Miner is also putting out new music videos through HDSA’s Guthrie Sessions to increase awareness and we wrote our last album while we were being tested so it is about that time in our lives. We’ll be releasing new music in June this year and will continue to tell our family’s story.
Q 5) Favorite show, actor, musician, moment in your career? Favorite Show: Of all time – The Wire. Currently – Crashing. Actor: Tina Fey Musician: Conor Oberst Moment: Playing the High Sierra Music Festival
Thank you Kate for the interview and supporting my HD fundraising/awareness project.
To purchase my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, go to: https://www.theresecrutchermarin.com