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#cure4hdandjhd

Taking Care of Yourself

An All Level PI-YO Class For the Huntington’s Disease Community

    

Have a glass of wine and experience a relaxing, gentle PI-YO (pilates/yoga) class.  You deserve it.  Kat Fillare, pilates instructor, and Amanda Strewsbury, yoga instructor, will lead you through a calming hour and a half.

Register here:  http://greaterla.hdsa.org/stretch

While you enjoy you will be helping in the fight against Huntington’s disease (HD); a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time.  A child with a parent with HD have a 50/50 chance of inheriting the mutated huntingtin’s gene that causes the disease.

We Can Never Lose HOPE………..

Author Therese Crutcher-Marin

My Author Website:  https://theresecrutchermarin.com   

HDSA Fundraising events

Amaryllis Holiday Sale Helps in the Fight Against Huntington’s Disease

Order your Amaryllis Holiday Kits Today!   

The amaryllis commonly symbolizes strength and determination. The Huntington’s disease community has adopted this flower to represent hope and celebrate the advancements in HD research.

Order you Amaryllis flower kit(s) here 

The nonprofit, Huntington’s Disease Society of America (HDSA) receives $5.00 from every kit purchase.  Please designate San Francisco Bay Area Affiliate to receive the credit for the sale.

Amaryllis- Individual Kits

Amaryllis bulbs are among the easiest bulbs to grow indoors and the most rewarding. These premium Dutch bulbs need minimal attention but you will be rewarded with spectacular blooms to brighten up the dark winter days.
Planting Amaryllis and watching them grow is a fun activity for the entire family.

Each Amaryllis kit will contain everything you
need to have your own spectacular Amaryllis
this winter including:
• One 26/28 cm Amaryllis Bulb
• Decorative Pot
• Professional Growing Medium
• Planting Care and Aftercare Instructions
Each kit costs only $10.00 (plus s&h)

Author Therese Crutcher-Marin

We Can Never Lose HOPE…….

 

 

Huntington's Disease

The Are No Words…………

There are no words when talking about Huntington’s disease (HD) and Juvenile Huntington’s disease and the devastation it causes in a HD family for generations.  It is truly the cruelest disease on the planet and causes great suffering and anxiety that can only be imaged if it is in your family.

Because children from a parent with HD have a 50/50 chance of inheriting the disease, approximately 200,000-250,000 live at risk for the disease.  Since it is a rare disease, 41,000 American’s live with the disease and, unfortunately, it is progressive and has a 10-20 year prognosis. 

A HD family deals with high emotional stress, financial devastation, anticipator grief for years, and multiple family members may have the disease at the same time. 

 

Author Therese Crutcher-Marin

The good news is that there are promising clinical trials being conducted around the world.  I’m an Huntington’s disease advocate and my plea to you today is to pray the trials will have positive outcomes, and the  U.S. Orphan Drug Act (ODA) will be requested and the FDA (Food and Drug Administration) will quickly approve it.

We Can Never Lose HOPE….

Fundraising

AmazonSmile-An Easy Way to Donate to Your Favorite Charity

The Holiday Season is here so when making purchases on Amazon, use  AmazonSmile  and support your favorite charitable organization every time you shop with Amazon.

Author Therese Crutcher-Marin, HD Advocate

My charity is Huntington’s Disease Society of America 

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.

1. Visit smile.amazon.com

2. Sign in with your Amazon.com credentials

3. Choose a charitable organization to receive donations, or search for the charity of your choice

4. Select your charity

4. Start shopping!

We Can Never Lose HOPE……………..

The Marin Siblings

Marcia Louise Marin

Marcia Louise Marin would have been 71 years old today.  Happy Birthday, Marcia! 

I celebrate this day in her memory and acknowledge the strength, courage, tenacity, positivity and kindness that Marcia showed toward me and others.  She was the second child born to John and Phyllis Marin, and having a parent with Huntington’s disease (HD) Marcia had a 50/50 chance of inheriting the mutated huntingtin gene from her mother, Phyllis Iva (Cahoon) Marin.   

Lora, Cindy and Marcia Marin

Marcia, at the young age of 30, was the first of my three sisters-in-law to show symptoms of Huntington’s disease. What is Huntingtons disease

Marcia’s first symptoms, that I noticed in 1980, were twitches and an unsteady gait. By the time she was 34 years old, she was retired from AT&T; unable to continue working because of forgetfulness, loss of concentration and coworkers and supervisor believing she was drunk on the job. She struggled with Huntington’s disease for 15 years and died on September 8th, 1999 at age 49.

I wish her story had been different and we could have enjoyed life together.  I wish my children, Keith and Vanessa, could have had time with this wonderful person who would have been an awesome aunt.

Author Therese Crutcher-Marin

The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has NO CURE.  book reviewsWatching the Dance Huntingtons Disease

100% of book sales is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon and many other book websites. My author website:  theresecrutchermarin.com

HDSA Fundraising events

VIRTUAL 6TH ANNUAL FREEZE HD RAISES $200,000 FOR HDSA

Author Therese Crutcher-Marin

A global audience of nearly 4,000 tuned into the Virtual 6th Annual Freeze HD event on Saturday, September 26th which raised $200,000 to support the fight against Huntington’s disease (HD).  Due to the COVID-19 pandemic, the Huntington’s Disease Society of America (HDSA) transitioned the world’s largest and most-anticipated HD fundraising event to a virtual format.

Hosted live by actor Scott Porter from a secure location in Los Angeles, Freeze HD featured an incredible online auction, live music with Brian Logan Dales from The Summer Set and dozens of videos from celebrities offering their support in the fight against HD.

Missed the show? No problem! CLICK HERE TO WATCH THE RECORDING OF THE VIRTUAL 6TH ANNUAL FREEZE HD. Donations are still being accepted to support the event by visiting HDSA.org/freezehd!

HD is described as a combination of ALS, Parkinson’s & Alzheimer’s. This devastating brain disorder, with no cure, is known as the quintessential family disease because each child of a parent with HD has a 50% chance of inheriting the gene that causes HD.

“Each year, Freeze HD is star-studded call to action to stop Huntington’s disease in its tracks.   While we missed gathering in person, hosting the event virtually reached the global HD community and allowed more families to connect and be inspired in this fight,” said HDSA’s President & CEO Louise Vetter.  More about the nonprofit Huntington’s Disease Society of America

We Can Never Lose HOPE….

 

 

 

HD Research

Walk For Huntington’s Disease Research This Saturday

HDSA 2019 Convention

John and I ask for your pledge to support Huntington’s Disease (HD) research to help families like mine.  John and I lost his three (3) sisters, mother, aunts, uncles and cousins to this horrific disease that has NO CURE. What is Huntington’s Disease 

This year I became the chair for the HDSA San Francisco Bay Area Affiliate to help HD families find the resources they need to have the highest quality to their lives and to not feel alone. sanfranciscoaffiliate  and  facebook.com/hdsasanfranciscobayarea

Lora, Cindy and Marcia Marin

Sign up for the 14th Annual San Francisco VIRTUAL Team Hope Walk this Saturday, October 3rd, or make a donation to help in the fight against HD.  https://www.hdsa.org/thwsanfrancisco

A virtual walk is a real walk, but on your terms: You get choose to your own course, you can walk in your local park, hiking trail, driveway, neighborhood, or in your house and even on treadmill! Invite your friends and family to be on your team, they can walk with you wherever you are. 

We Can Never Lose HOPE…

 

HD Research

Walk With Amy Fedele To Fundraise for Huntington’s Disease Research

HD Advocate Amy Fedele

The San Francisco Virtual Team Hope Walk is coming up this Saturday, October 3rd! Please DONATE or PLEDGE to support my friend, Amy Fedele, as she and her family walk to support Huntington’s Disease research.

Amy’s story & Donation page: https://app.donorview.com/kP5EW  

Amy was diagnosed with the gene that causes Huntington’s disease (HD). 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. More about HD

She volunteers her time to raise awareness and raise money to offer additional resources. She supports families affected by HD, like her own, so they never feel alone in their fight against HD.

Amy’s mother also tested positive for HD, as well as her uncle and aunt who passed away due to complications from HD. She’s her mother’s caregiver and, luckily, her brother tested negative for the gene that causes HD.

To make a donation to Huntington’s Disease Society of America (HDSA), click here:  DonateHere

Author Therese Crutcher-Marin

100% of the proceeds from the nonfiction book I published, is donated to HDSA. Since publishing, I’ve donated over $16,000.00.  Watching the Dance Huntingtons DiseaseBuy it on Amazon: AmazonWatchingTheirDance

We Can Never Lose HOPE……  

HDSA Fundraising events

Stretch It Out For Huntington’s Disease-A Yoga Class

STRETCH IT OUT FOR HUNTINGTON’S DISEASE
Do you need some essential oils in your life? Well, this is your chance to win a free aromatherapy rollerball from Love Your Brain Foundation! Sometime during our class on Saturday, we will announce the winner of this raffle. The way it works is easy:
1. Invite friends to this Facebook event or share the link to the HDSA fundraiser page with them directly. https://sanfrancisco.hdsa.org/stretchitout   Each friend you reach out to counts as one raffle entry. I know many of you have already invited friends to the page, so we will accept the following as “invites”: 1) new invites (have not seen link or page before), or 2) personal follow ups to people you have already invited, encouraging them to come to the event
2. Message Amanda Shrewsbury on facebook, instagram, or comment on a post with the number of people you have invited or followed up with. You don’t have to do all of your invites/follow ups at once. I will keep a running tally of your number and you can send as many messages/comments as you’d like!
3. Wait for the announcement of the winner at the event and get excited!
It’s FREE to join the class and donations are welcomed and appreciated.  Sign up and we’ll send you a Zoom link the day before the class.  https://sanfrancisco.hdsa.org/stretchitout
For more information on Huntington’s disease or to make a donation, please visit:  http://hdsa.org
We Can Never Lose HOPE…….
Survival

Stretch It Out For Huntington’s Disease

Please join HDSA volunteer Amanda Shrewsbury, yoga certified instructor, for an hour of peaceful yoga on Saturday, August 22, 2020.  It’s FREE to join and it is virtual so after signing up you will receive a zoom link. 

Sign up here:  https://sanfrancisco.hdsa.org/stretchitout

 

The HDSA San Francisco Bay Area Affiliate wanted to hold an event that could calm folks during this pandemic, which we have never experienced before.  COVID-19 creates stress in our lives;  families are out of work or working at home and trying to teach their kids.  Communicating with loved ones and friends is virtual now and hugs are out of the question.

Caring for a loved on with Huntington’s disease (HD) is stressful enough, and very isolating, and COVID-19, compounds the worry.  HD is a rare, fatal, genetic brain order that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE.  What is HD?

I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we are hosting a new virtual event to help with the stress, at least for a little while.

FaceBook Event Page:  https://www.facebook.com/event and San Francisco Bay Area Affiliate FB page:  https://www.facebook.com/hdsasanfranciscobayarea 

We Can Never Lose HOPE………

Author Therese Crutcher-Marin