Huntington’s Disease has been described as the worst disease known to man, and also known as “The Devil’s Disease“.
Lora, Cindy and Marcia Marin
I call it the cruelest disease on the planet having lost my three sisters-in-law and mother-in-law to Huntington’s disease.
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 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 carrying the faulty gene. Death usually occurs 10-20 years after disease onset. During the progression of the disease, movement disorders typically occur. The movement disorders include ~ chorea, dystonia, and tremors.
Today, approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
Many describe HD as having the symptoms of ALS, Parkinson’s and Alzheimer’s – simultaneously.
#LetsTalkAboutHDis a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows our story.
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
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.
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 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. Buy it on Amazon: AmazonWatchingTheirDance
Hold your Yodel, not all Oktoberfest events are canceled for this year… That’s right; have we got a treat for you!
You may not be able to be at your favorite festival with several hundred of your closest friends, family, and neighbors but you sure can still enjoy craft beer! Oktoberfest is most definitely one of those times that we look forward to gathering in the Fall for this amazing German tradition with great food, music and of course beer.
We will gather with Nathan, owner of Angry Horse Brewery and learn a little bit about what goes into making incredible beer and the fixings to go with it! You don’t even have to leave your doorstep. Just click on the link, place your order and Angry Horse will ship your “tasting pack” straight to your home. Simple, fast and easy and all for a great cause! Angry Horse is graciously donating their time, talents and all proceeds for this event will go back to Huntington’s Disease Society of America to support families with Huntington’s Disease. http://hdsa.org
Although Angry Horse has a full selection of beers, here’s a little peak of a few beers we will be tasting:
Oktoberfest A dark colored lager traditionally brewed in March and fermented throughout the summer Months. This Marzen style beer has rich malt flavors, subtle hops and is easily drinkable.
Hay-z A New England Style IPA with Aromas of papaya, raspberries and pine are accompanied by hearty, bread-y notes.
Regal Beagle – Blond Ale A delicate ale. The English hops produce notes of oolong tea and subtle hints of orange. Earthy undertones.
Purple AF (And Fermented) – Hibiscus Saison A delicate ale. The English hops produce notes of oolong tea and subtle hints of orange. Earthy undertones. This a bonus “featured” beer that will be available to purchase as an optional add on.
The Beast – Belgium Golden Strong (Only availble with “Oktoberfest Box” purchase) The Beast, our Belgian Golden Strong Ale comes in at 8.5% ABV. It’s spicy and distinctive with a strong ester profile. The big fruity flavor and artfully balanced hop character opens up to warming alcoholic touch. It debuted as a limited edition at Los Angeles County Beer Week in 2017.
The wine tasting event supports the nonprofit, Huntington’s Disease Society of America (HDSA), that is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://hdsa.org
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 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
There is NO CURE for Huntington’s disease or Juvenile Huntington’s disease.
For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.
In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.
A VIRTUAL walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill!
Sign up now and participate in the virtual walk by raising money and awareness. Your family, friends,colleagues and health care providers can join your Virtual Team Hope Walk on MAY 2nd, 2020, 10 AM (PST).
*Join the HDSA Familyon May 2nd as we kick offHuntington’s Disease Awareness Month with the LARGEST TEAM HOPEEVENT EVER!