Browsing Tag

#familyiseverything

Thankful

4th of July in Canada

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.       

 

We Can Never Lose HOPE……………….

HD Clinical Trials, Hope

The Pharmaceutical Company, Genentech

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.

HD Advocates

Congressmen Kinzinger & Pascrell and Senators Cassidy & Gillibrand Introduce ‘Huntington’s Disease Parity Act’

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 CassidyMaking 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.”

To read the full article, go to:  https://kinzinger.house.gov/news/documentsingle.aspx?DocumentID=402061

Huntington’s Disease Society of America (HDSA) has made it very easy to send a letter to your senator/congressmen in your area.  The letter is written and you put your name on it and add a comment if you like.  Go Here:  https://cqrcengage.com/hdsa/app/onestep-write-a-letter?15&engagementId=496303

If you haven’t signed up to be an HDSA E-Advocate please go here:  https://cqrcengage.com/hdsa/app/register?16&m=182462

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-jsimpson@hdsa.org

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

Prevalence of HD in the San Francisco Bay Area

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:

1.  The Bay Area population is approximately 7.1 millionhttp://www.bayareacensus.ca.gov/

2.  The statistics on the prevalence of Huntington’s Disease in the U.S. is approximately 70 to 100 people per million have 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 approximately 490 to 700.

I believe this is a conservative number because these statistics on Huntington’s disease have been used for many years.

I used the statistics from the National Institute of Neurological Disorders and Stroke.  https://www.ninds.nih.gov Huntington’s Disease-Hope-Through

We Can Never Lose HOPE……………..

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.

#LetsTalkAboutHD #HDSA

 

Storytelling

We Learn Through Storytelling

Author Therese Crutcher-Marin

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

Don’t be afraid to write your story.  It’s important and you never know how your story will affect other people. Why is storytelling important?

     

We Can Never Lose Hope………

Author Therese Crutcher-Marin Author Website:  http://www.theresecrutchermarin.com

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, HDSA.

Available on Amazon 

Family

The Birth of Christ and Advent

My mother holding me during my first Christmas

Me with older sister, Ellen

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. 

                              Merry Christmas 

We Can Never Lose Hope…..

Family

Christmas In Tuscany Italy

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.  

We Can Never Lose Hope……

 

Family

Christmas Adventure with Aunt Marcia-Chapter 26

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 

 

Caregiving

Caregivers-Be Kind to Yourself-Part 1

As a caregiver, one must remember to take of yourself because if something happens to you, what will happen to your loved one you care for?  Caregiving a loved one with Huntington’s disease is unique.  Caregivers-Guide-to-Huntington’s Disease

AARP suggests 10 things caregivers can do to stay healthy. 

Here are the first 5.

6-10 will be on my December 6th blog.

1. Eat well-balanced meals

And do so on a regular schedule. Take a daily multivitamin. Drink six to eight glasses of water a day.

2. Exercise every day

Move your body daily, even if it’s simply 15 minutes of stretching, yoga, calisthenics or walking. Use the stairs to keep your circulation going.

3. Get outdoors

Fresh air renews the body and spirit — even if you only have time for a brief outing. When possible, open a window.

4. Get your zzz’s

Strive for a minimum of seven to eight hours of consecutive sleep in a 24-hour period. Nap when your loved one naps.

5. Treat yourself

That is, get treatments for your own aches and pains before they turn into something more serious.

Caregiver support groups can be found on Facebook.  Here’s two to check out:  https://www.facebook.com/groups/103001490399094/

https://www.facebook.com/groups/103001490399094/

We Can Never Lose HOPE……..

100% of the profits from the book are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

 

 

Family

Happy Turkey Day

    From my family to yours, Happy Thanksgiving! 

    

We Can Never Lose Hope………….