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#HDSA

May is HD Awareness Month

May is Huntington’s Disease Awareness Month

Author Therese Crutcher-Marin

Let’s Kick the Month off with #LetsTalkAbout HD

#LetsTalkAboutHD is 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. 

What is Huntington’s Disease?   read more about HD here

HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers simultaneously.  There is NO CURE and 5% to 10% of all cases are children with Juvenile HD.                

Here’s a little bit about my Huntington’s Disease Journey with my three sisters-in-law, Lora, Marcia and Cindy who have all passed away from Huntington’s Disease complications.

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……  

Fundraising

Hold Your Yodel! A Virtual Oktoberfest Tasting Event

Author Therese Crutcher-Marin

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.

Register here to receive the beer before October 1st.    https://pacificreg.hdsa.org/about/2020-oktoberfest-virtual-tasting

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.

We Can Never Lose HOPE…………

HDSA Fundraising events

For The Love of Wine and Huntington’s Disease

Sip Back and Relax…

Get ready to sip, swirl and taste amazing wines while supporting families with Huntington’s Disease on August 16, 2020. 

That’s right, by popular demand we put it together!    This is one event you don’t want to miss.

Join us for a night of great wine, great friends and a great cause.                                                                                        All from the comfort of your own home.

For more information or to join us click here: https://app.donorview.com/em6RJ

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

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

Huntington's Disease

Huntington’s Disease-A RARE Genetic Disease

Huntington’s Disease is the Cruelest Disease on the Planet!

What Is Huntington’s Disease?  HD affects the whole brain, but certain areas are more vulnerable than others. Pictured above are the basal ganglia – a group of nerves cell clusters, called nuclei. These nuclei play a key role in movement and behavior control and are the parts of the brain most prominently affected in early HD.

To watch a video on Huntington’s disease, please go to:  What is 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 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.

Huntington’s disease organizations in the U.S.:

Huntington’s Disease Society of America http://hdsa.org

Help4HD International  https://www.help4hd.org/

We Have a Face https://www.wehaveaface.org/resources

Huntington’s Disease Foundation  https://www.huntingtonsdiseasefoundation.org/

Hereditary Disease Foundation  https://www.hdfoundation.org/

We Can Never Lose HOPE………….

#LetsTalkAboutHD         Author Website:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin

HDSA, Huntington's Disease

What is Huntington’s Disease? A New Video

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.

#HuntingtonsDisease #LetsTalkAboutHD #HDSAFamily #HDSA #Huntingtons #Disease #Brain #HD

 

Author Therese Crutcher-Marin, HD Advocate

To learn about Therese, visit her Author Website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE….

HDSA Fundraising events

May 2nd-VIRTUAL Team Hope Walk

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 Family on May 2nd as we kick off  Huntington’s Disease Awareness Month with the LARGEST TEAM HOPE EVENT EVER!

 

*Register today for the Virtual Team Hope Walk at pacificreg.hdsa.org

       

      JOIN AS A VIRTUAL WALKER FOR FREE! 

 

We Can Never Lose HOPE…….

Huntington's Disease

Huntington’s Disease & COVID-19 Pandemic Resources

HD & COVID-19 PANDEMIC RESOURCES

Please click on Title, above, to find virtual Huntington’s disease resources and the video,  HDSA’s Here’s The Deal” tackles important topics to help you navigate through your journey with Huntington’s disease (HD). In this episode Jennifer Simpson, LCSW sits down with Dr. Victor Sung & Dr. Arik Johnson to discuss COVID-19 & HD.

                                                 

LOCAL HDSA EVENTS

Due to social distancing requirements, all of HDSA’s in-person events and fundraisers through April 30th are postponed. Additionally, many May events are also being rescheduled. We encourage you to visit the event calendar at HDSA.org for the most up-to-date information about events in your community.

Importantly, HDSA’s Team Hope Walk Program is going virtual!   

Visit HDSA’s Event Calendars

We Can Never Lose HOPE……   

Author Therese Crutcher-Marin

Therese’s Author Website is:  https://theresecrutchermarin.com

 

 

 

 

 

 

 

 

 

 

 

HD Awareness

Turn Your Book into a Movie Voting Continues 22 More Hours

The contest continues!  You have another 22 hours to vote for Watching Their Dance.

TaleFlick.com hosts a contest that allows the public to vote on which stories they want to see adapted to the screen.   

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is one (1) in 40 books competing.

Please VOTE for my book.  It will give Huntington’s Disease great exposure, if I win. For information on Huntington’s disease, please visit http://hdsa.org

VOTE HERE:  https://taleflick.com/pages/discovery?app_data=entry_id%3D241154115%26referer_override%3Dhttps%253A%252F%252Fwww.facebook.com%252F&fbclid=IwAR3XP2nEDEXt1aEoWXUXsXoKhW5vtLKpmohFoUJ7Sp2hDnB3kX8AWdiQsOs

HDSA 2019 Convention

Therese at the 2018 HDSA Annual Convention in LA.