John and I are celebrating the 4th of July this year in Canada. I was attending the 2019 HDSA Annual Convention in Boston, and from there John and I traveled to Waterloo New York and stayed in Gridley Bed & Breakfast for two days to relax.
I have always wanted to see Niagara Falls, and decided to stay on the Canadian side because friends suggested it, so we arrived in Canada on July 2nd. We’re staying at the Villa Alexandrea Bed & Breakfast in Niagara Falls Canada.
From my family to yours, have a wonderful 4th of July.
Statement from Genentech. “There’s an innate brilliance in each of us. It lives in the thousands of thoughts and feelings that move through our bodies each day. It comes to life in our expressions and movements. In how we connect with each other, and in the moments and memories we create together.
Neurological conditions can dim this brilliance. They can create barriers that impede our ability to communicate. To move. To remember. Over time, these diseases can rob us of our identities.
Our hope is that through our work in neuroscience, combining new scientific understanding with clinical advancements, we can help preserve the unique qualities that make people who they are.”stories/preserving-what-makes-us-who-we-are
Author Therese Crutcher-Marin
Last December, Roche/Genentech announced the locations, including 20 sites in the U.S. and 6 in Canada, for their phase 3 study – called GENERATION HD1 – to test efficacy of the huntingtin-lowering therapy RG6042. To read full press release, visit RG6042-GENERATION-HD1-Study-update-.pdf
We Can Never Lose HOPE……………..
Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions.
The Huntington’s Disease Parity Act, H.R. 2770, was re-introduced asking to waive the two (2) year waiting period to receive Medicare Benefits when a person with Huntington’s disease (HD) has been determined to be disabled.
“As a doc, I know treating a patient in early stages of disease is critical to good outcomes,” said Senator Cassidy. “Making patients wait two years for treatment through Medicare puts their health at risk and increases the cost of their care. This legislation ensures patients receive the care they need at the most crucial point in their diagnosis.”
This is so important to the Huntington’s Disease community. Please take the time to send the letter. For more information, contact Jennifer Simpson, LCSW, HDSA Senior Manager, Advocacy & Youth Programs.212 242-1968 Ext. 226. email@example.com
We Can Never Lose HOPE…………
I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA. You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance
Huntington’s disease (HD) is considered a rare disease but when you look at the number of American’s affected by the disease, it is disconcerting.
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 250,000 at-risk of inheriting the disease. https://hdsa.org/what-is-hd
Let’s evaluate the San Francisco Bay area population:
2. The statistics on the prevalence of Huntington’s Disease in the U.S. is approximately 70 to100 people per millionhave HD.
3. That equates to approximately 490 to 700 people in the Bay Area that are living with HD. That doesn’t sound like many, but if you’re one of the families struggling with HD, its stressful and devastating.
3. The total number of people living in the San Francisco Bay Area with HD is approximately490 to 700.
I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.
I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease. Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon. 100% of the profits are being donated to HDSA.
I believe we learn best through stories; whether the story is shared orally, in writing, theatrically, artistically through many mediums, painting, film, architecture, glass, ceramics, etc.
“Stories have power. They delight, enchant, touch, teach, recall, inspire, motivate, challenge. They help us understand. They imprint a picture on our minds. Want to make a point or raise an issue? Tell a story.” — Janet Litherland
In the 1960’s, when my three sisters and I were growing up in Shawnee Mission, Kansas, my parents, Jim and Rita always made Christmas special for their children. Since we were a Catholic family, the focus was on the birth of Christ. Every year, my mother brought out the Advent Wreath that held three purple candles and one pink, designating the four weeks before Christmas. Before dinner, we said our prayer and then lit the appropriate candle(s). The themes of Advent are hope, peace, joy and love.
I have fond memories of Christmas Eve; dinner and presents at my Grandparents home, midnight Mass and a life size Nativity scene in the hall outside St. Pius Church entrance.
May your holiday be filled with hope, happiness, love and family memories, new and old.
I’ve had something on my Bucket List for a very long time, and this year I get to check it off. (A Bucket List is a list of things that one has not done before but wants to do before dying.)
My wish is to experience Christmas in another country without the commercialism and hype that we see in the United States. Quite frankly, I’m tired of blow-up snowmen displayed on lawns and the Christmas ads on TV before Halloween.
My family will be celebrating Christmas in the quaint little Italian town of Cortona, Italy. Keith, Fran, Scott and Vanessa will arrive on December 22nd along with Dawn, Jim and Casey Garrett.
Since John and I are retired, we left on November 29th and flew into Lisbon, Portugal and began a journey traveling through Spain, France and into Italy, arriving December 18 . We booked a 9- bedroom villa, Villa Luisella, for a week for all of us to enjoy together. Cortona is a town in the province of Arezzo, in Tuscany, Italy. It is the main cultural and artistic center of the Val di Chiana after Arezzo. Discover Tuscany-Cortona
A few days after Christmas, December 29th, John and I will take a train to the Zermatt, Switzerland where John will ski and we’ll celebrate the New Year.
Excerpt from the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s:
In Chapter 26, page 206, John and I take Aunt Marcia, Keith and Vanessa on a Christmas adventure to cut down a Christmas tree and on the way home we stopped and had hot chocolate. It’s a positive memory my children have with their Aunt Marcia who was struggling with Huntington’s disease.
“Two weeks before Christmas, we treated Marcia and the kids to a surprise. We loaded everyone into the van and headed to McBurney Christmas Tree Farm, just outside Grass Valley. We slid a Mickey Mouse Christmas cassette into the tape player, and Keith and Vanessa sang The Twelve Days of Christmas all the way there. Just as we pulled into the parking lot, snow began falling, setting the stage for a perfect day. John turned around and said, ‘You guys get to pick out your very own tree this year, and then you can help me cut it down.’
Keith’s eyes grew big. ‘Do I really get to help chop it down, Dad?’
‘Yes, but you have to mind your father, Keith, and do exactly what he tells you.’ I bundled the kids up, and they were out of the car in a heartbeat.”
Watching Their Dance, an inspiration love story while living in the shadow of Huntington’s disease. 100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America. It’s available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon