Browsing Tag

#HDSA

Huntington’s Disease Society of America Centers of Excellence

Louise Vetter, CEO and President of the nonprofit, Huntington’s Disease Society of America (HDSA), has made increasing the number of HDSA Centers of Excellence, in the U.S., as one of her priorities in her 10- year leadership at HDSA. Louise said, “We are deeply committed to helping families affected by HD access experienced care.”

In 2020, HDSA Centers of Excellence (COE) program expanded to 50 Centers from 47 in 2019, and from just 20 in 2015. The HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing comprehensive care.

Currently, there are now 54 COE’s and California was a blessed to have seven (7) COE’s at Stanford University, University of California, San Francisco, University of California, Davis, University of California, Irvine, University of California, Los Angeles, and University of California, San Diego. HDSA Center of Excellence Partners: Kaiser Permanente Northern California.

Find an HDSA Center of Excellence In Your Area

When Huntington’s disease families connect to a Center of Excellence, they will find support and invaluable resources to help their family as they struggle with the many challenges of HD.

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin, HD Advocate

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October 14, 2021 by crutcht

HD Awareness

What is the Huntington’s Disease Advocacy Caucus?

Jennifer Simpson, Senior Manager of Advocacy and Youth Programs at Huntington’s Disease Society of America is leading the HD Advocacy Caucus. HDSA San Francisco Bay Area Affiliate has one board member on the Caucus who reports to the SF Affiliate Board at the monthly meeting.

Mission of the HD Advocacy Caucus:

To engage and create more advocates in order to change public policy to improve the lives of individuals and families living with Huntington’s disease (HD) at the Federal and State levels

What do we do:

Raise awareness about HD-related legislation
Advocate for HD-related legislation by engaging with US legislators
Recruit, activate and train advocates

Goals:

Pass legislation that facilitates access to care and/or improves the lives of people living with HD
Increase the number of legislators educated about HD and engaged with the HD Community
Advocate for HD-related legislation by engaging with U.S. legislators
Pass the HD Parity Act

What are we working on:

Passing the Huntington’s Disease Parity Act, advocating for increased access to telehealth services through the Covid-19 Pandemic, Strengthening GINA
Training and Engaging Advocates like you so you can engage your US legislators in the fight to improve the lives of individuals and families impacted by HD

We Can Never Lose HOPE……

July 29, 2021 by crutcht

HD Awareness

What Disease is the Cruelest on the Planet?

Author Therese Crutcher-Marin

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.

Click here for more information on Huntington’s disease and find other support here: Huntington’s Disease Clinics which are called HDSA Centers of Excellence, support group meetings and online support groups, contact info on a HD social worker, and HD events in your area.

We Can Never Lose HOPE…….

Please make a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) and help us in the fight against HD.

July 13, 2021 by crutcht

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……….

May 3, 2021 by crutcht

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…

October 1, 2020 by crutcht

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. Buy it on Amazon: AmazonWatchingTheirDance

We Can Never Lose HOPE……

September 29, 2020 by crutcht

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…………

September 23, 2020 by crutcht

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

August 4, 2020 by crutcht

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

May 24, 2020 by crutcht

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