Browsing Category

HD Awareness

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……

HD Advocates, HD Awareness

Heightening Huntington’s Disease Awareness in the San Francisco Bay Area

The Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate is conducting a new outreach strategy in the greater San Jose area.   Huntington’s  disease (HD),  a rare,  fatal,  genetic brain  disorder,  is  not  known  by  most  people.  If  they  have  heard  of  HD,  they  don’t  know the  details  of  how  it  affects  a person  and  their  family  for  generations.  

HDSA Affiliate volunteers, Uma, David, Jay and myself are manning a table at the Campbell Farmers Market on Sundays from 9 am-1 pm spreading the word about the Cruelest Disease on the Planet; Huntington’s disease, and there is NO CURE.

41,000 American’s have the disease and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.  Of those 41,0000 symptomatic Americans, 16% are children with Juvenile Huntington’s disease.  

By our outreach efforts, we hope to reach Bay Area folks who are struggling with HD and inform them of the services available to their family.  

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

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

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.  

HD Awareness

Marin (Cahoon) Family Hit Hard by Huntington’s Disease

Phyllis Marin

As we celebrate Huntington’s Disease Awareness Month, I reflect on the Marin Family’s Huntington’s disease journey through the generations.  John’s mother side of the family, the Cahoon’s, battled Huntington’s disease (HD) and it’s overwhelming how many members of this family were affected.

HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s disease.  There is NO CURE and when a parent has HD, the children have a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.

The Cahoon family history of  Huntington’s disease dates back at least 4 generations. 

John’s great grandfather- Wilbert D. Cahoon

John’s grandfather-Charles Wilbur Cahoon

John’s mother-Phyllis Iva (Cahoon) Marin

Lora, Cindy, Marcia Marin

John’s three sisters: Lora, Marcia and Cindy

John tested in 2016 at the Center of Excellence at UC Davis Medical Center in Sacramento.  He tested anonymously and was negative for the mutated huntingtin gene.  His three sisters didn’t have children and with John negative results, Huntington’s disease is no longer in our family.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com 

 

 

 

 

 

 

 

 

 

 

HD Awareness

May is Huntington’s Disease Awareness Month

This year, the nonprofit, Huntington’s Disease Society of America,  will be launching two new initiatives during Huntington’s Disease Awareness Month.                                                                                                The 31 Days, 31 Stories video campaign will release a different HD story each day across HDSA’s social media channels.   HDSA will also share the first-ever Athletes vs. HD sports memorabilia auction which will open on May 1st and close on May 15th (International HD Awareness Day).

Learn about the cruelest disease on the planet, HD.

Make a donation to help in the fight against HD.

We Can Never Lose HOPE…

HD Awareness, HDSA Fundraising events

KSRO Talks with Therese Crutcher-Marin About Huntington’s Disease

Listen to the in-depth talk I had with Michelle Marques, host of Sonoma County Focus on radio station KSRO in San Francisco North Bay. 

Click here to listen to the interview:  https://www.ksro.com/episode/sonoma-county-focus-fundraiser-for-huntingtons-disease-society-of-america/

Heightening awareness of Huntington’s Disease is important so I was grateful to have twenty minutes to talk about the disease.  I also shared information regarding the HDSA San Francisco Bay Area Affiliate upcoming Virtual Trivia Night with Sonoma County Beer fundraiser on April 25, 2021.

Enjoy a night of Trivia while sipping on HenHouse, Bear Republic & Lagunitas beer!

Sunday, April 25, 2021 5:00 pm – 8:00 pm

Open to San Francisco North Bay residents/or anyone who can pick up their beer in Petaluma.

Must be 21 or older to participate.

$40 donation per person; each person will receive a total of 4 beers, a combination of HenHouse, Bear Republic & Lagunitas.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from one of the 3 beers.

Register Here:  https://sanfrancisco.hdsa.org/trivianight

 

We Can Never Lose HOPE…………..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com 

 

HD Awareness

Enroll-HD-A Resource for Everyone

Author Therese Crutcher-Marin

My family has been greatly affected by Huntington’s Disease (HD), and after my third sister-in-law, Cindy, died from HD complications, I searched for ways to help in the fight against the cruelest disease on the planet.  What is HD?

One way to contribute is through Enroll-HD.   Enroll-HD is a worldwide observational study of Huntington’s disease (HD), meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an Huntington’s Disease family can participate, regardless of gene status or risk. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD.

The study is enabling scientists to identify new drug targets, helping pharmaceutical companies to recruit participants quickly and efficiently for their trials, and moving the field towards an improved understanding of HD and quality care.

Learn more by visiting www.enroll-hd.org 

HD-Enroll knows that privacy is of the utmost concern to families with HD. Please review HD-Enroll’s privacy policy: https://enroll-hd.org/privacy/

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate and Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  Please visit my website at https://theresecrutchermarin.com

 

HD Awareness, Watching Their Dance

Jackie MacMullan-ESPN Columnist and Television Analyst

I’m posting a message from Jackie MacMullan, ESPN columnist and television analyst, and a supporter of the nonprofit, Huntington’s Disease Society of America (HDSA) for many years.

Author Therese Crutcher-Marin

Jackie has published many books in her career, so as a fellow writer, I’m sending her a copy of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, hoping she might mention the book so more dollars can be generated from sales that I will donate to HDSAIt’s a long shot!  You never know!

From Jackie:  “Nearly 30 years ago, I was working in the newsroom of the Boston Globe as a sportswriter when I fielded a phone call from a woman named Mae Long. She was the executive director of the New England chapter of the Huntington’s Disease Society of America and she wanted to know if I would shoot free throws to help find a cure for the disease. Article from: https://hdsa.org/living-with-hd/faces-of-hd/meet-jackie/

I was 22 years old at the time, a recent graduate of the University of New Hampshire, where I had played four years of basketball. Shoot free throws? Sure. But what was HD? I had never heard of it. What caused it? What were the symptoms? It was a mystery to me.

I went to Mae’s hoop-a-thon, and I was in for a rude awakening. I met a number of HD patients, some whose symptoms had not yet manifested themselves, and others who were in a wheel chair, unable to speak, in the advanced stages of a disease that I learned had no cure and indiscriminately decimated families.

It was impossible to forget those patients, their families and their poignant stories. Their plight stayed with me for days, weeks, and years. Before long, I was attending events, more hoop-a-thons, even spending a year as a national spokeswoman.

Three decades later, I remain committed to the HD community and its quest to find a cure. I’ve met and lost friends with HD, watching them slip away over time with uncommon grace and dignity.

Our family has befriended Meghan Sullivan, one of the rare patients who has been afflicted with early onset of HD. Meghan is only in her 20’s, but she is already in advanced stages of the disease. That has not stopped her and her mother Cheryl from being vocal advocates for the HD community.

I will never forget the evening Meghan stood in our kitchen and calmly explained to my husband Michael and me that she planned to put a face to HD for as long as her body and mind would allow it. She had already lost her father to the disease and promised him she would raise awareness. Her courage was both heartbreaking and inspiring. Though Meghan’s symptoms have limited her, she is still fighting, still honoring her commitment to her father.

If she hasn’t given up, then how can we?”

— Jackie MacMullan

We Can Never Lose HOPE…..

HD Awareness

Huntington’s Disease, One of 7000 Rare Diseases

It is May 31st and we close out Huntington’s Disease Awareness Month  #LetsTalkAboutHD

Author Therese Crutcher-Marin

For me, it’s not the end of raising awareness because I’m constantly posting Huntington’s disease (HD) information on all my social media platforms and wearing my Team Hope Walk T-shirt whenever I can.  What is Huntington’s Disease 

Since Huntington’s Disease is a rare disease, you may not know there are over 7,000 rare diseases. A rare disorder is a disease or condition that affects fewer than 200,000 Americans.  On the NORD, National Organization for Rare Disorders, website Huntington’s Disease is listed.   https://rarediseases.org/?s=H&post_type=rare-diseases

NORD’s mission statement:  “NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”

Register for the NORD Virtual Forum on July 18-19, 2020:  https://rarediseases.org/living-rare-forum/

Wikipedia says, “The US organisation Global Genes has estimated that more than 300 million people worldwide are living with one of the approximately 7,000 diseases they define as “rare” in the United States.”

We Can Never Lose HOPE…….

To receive my blogs, go to my Author Website https://theresecrutchermarin.com and sign up.  When you sign up, I will send you the first Chapter of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

 

 

 

 

 

HD Awareness

The Marin Family Huntington’s Disease Story

Author Therese Crutcher-Marin

My name is Therese Crutcher-Marin and I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   Therese’s Author Website    

Amazon.com/Watching-Their-Dance-Marrying-Huntingtons-

This is my HD story:  Lora, Marcia and Cindy Marin, my sisters-in-law, have died from HD complications, struggling with HD for 15-17 years. These wonderful women, who were my dear friends, enriched my life by their positive attitudes, kindness and by their strength and resilience in fighting HD.  I am blessed to have known the three women and they inspired me to write and publish the nonfiction, Watching Their Dance. I was determined to tell the Marin story.

My husband’s mother, Phyllis Iva (Cahoon) Marin was placed in Napa State (Mental) Hospital, in the late 1940’s, because of violent outbursts, hallucinations and her inability to take care of her small children.  The medical folks were unable to diagnose her and my father-in-law never heard the Huntington’s Chorea until he saw it on her death certificate. She died in 1968, at age 48, by strangulation as she had to be tied down because the chorea was so bad. 

Phyllis Marin

       

“HUNTINGTON’S DISEASE is the CRUELEST Disease on the Planet”  

We Can Never Lose HOPE………….  #LetsTalkAboutHD

To learn more about Huntington’s disease and HD resources, visit: http://hdsa.org