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HD Awareness

Last Day For Huntington’s Disease Awareness Month

Today is the last day of the focused HDSA marketing campaign, #LetsTalkAboutHD, for Huntington’s Disease Awareness Month.  Just because it is the last day, all the 50 HDSA Chapters & Affiliates around the country continue to raise awareness of this horrific disease.

Recently I had an individual ask me, “What good does it do talking about Huntington’s disease (HD)?”

There are many responses to this question.  Here’s some of them.

  1.  By heightening awareness, we are educating the public about the disease.
  2.  Awareness can help a family struggling with a HD diagnosis to find services/programs they may need.
  3. Explaining the rarity of HD may motivate folks to donate to the nonprofit Huntington’s Disease Society of America (HDSA) to help fight the disease. (there are more than 7,000 rare diseases affecting more than 30 million Americans)
  4. Awareness may motivate folks to volunteer for HDSA.
  5. Being aware of a disease and its symptoms means HD families are more likely to take preventative action, and go for screenings, tests and check-ups.
  6. A lack of awareness of diseases or knowledge of options for screening and treatment is a serious barrier to good health.
  7. Heightening awareness of rare diseases, like HD, are frequently debilitating, and patients may face additional challenges because of the limited knowledge of many rare diseases. Symptoms of rare diseases may resemble those of more common conditions, which often leads to a significant delay in getting a correct diagnosis.

We Can Never Lose HOPE…..

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

 

 

May 31, 2023 by
HD Clinical Trials, HD Community

GENERATION HD2-Clinical Trial Open to the Huntington’s Disease Community

The HDSA RESEARCH WEBINAR: The Roche/Genentech GENERATION HD2 Study of Tominersen; a new clinical trial that is now open to folks with Huntington’s disease (HD) who meet the criteria. The webinar is worth watching.  
Tominersen is an antisense therapy that acts by reducing the production of all forms of the huntingtin protein (HTT), including its mutated variant (mHTT), which is believed to be the main cause of HD.

Info on the study:
-Adults 25-50 years of age (early stage of HD)
-360 people in the study
-Clinical trial locations will be in 15 countries; more than 1 in US
-16 month treatment period
Go to: http://gene.com/patients/clinical-trial-information to read about the Tominersen study and how to get involved. Or ClinicalTrials.gov or signup for HDTrialFinder

Huntington’s disease is a rare, fatal, genetic brain disorder that has NO CURE, strikes young, is a long and progressive disease and has the symptoms of ALS, Alzheimer’s and Parkinson’s, simultaneously.  41,000 Americans are symptomatic and approximately 200,000 are at risk.

We Can Never Lose Hope…

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

February 22, 2023 by
Grief, Love

Huntington’s Disease – Grief During The Holiday Season

Author Therese Crutcher-Marin

As some of you know, I call Huntington’s disease (HD), the cruelest disease on the planet.  It’s the Holiday Season, a time we celebrate with family/friends and, it can be a difficult time for HD families who have lost loved ones.  When I see obituary’s on folks who have passed away from a complication of Huntington’s disease in the holidays, my heart aches for the family.  (I’m also sad when it’s not the holidays) 

During the holiday season, whether it was a recent loss or one that occurred some time ago, feelings of grief can be heightened and may seem enormous. Griefland by Thomas Nadelin  (book on grief)

Experts on grief suggest we remember, new memories does not erase old memories. These memories are precious and can bring comfort to the difficult time.  Also, because we LOVE, grief is the price we pay.  It is a huge price paid!  (it’s not something we think of when we fall in love with someone, or our love for son’s, daughter’s, mothers, fathers, friends, etc.)

We Can Never Lose HOPE…..

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Watching the Dance Huntingtons DiseaseVisit my website and learn about HD:  https://theresecrutchermarin.com

 

 

 

 

 

December 14, 2022 by
HD Research

Enroll-HD

Author Therese Crutcher-Marin

So, you have decided to move forward and participate in a clinical trial for Huntington’s disease (HD).  It’s a brave, selfless act to help find a therapy or cure for this horrific disease.  I admire people who want to do this for their family and for the Huntington’s disease community around the world. Thank you.

Where do you begin?  My suggestion is to start the process by enrolling in Enroll-HD.   

Enroll-HD is a worldwide observational study of Huntington’s disease, 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 HD 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.   Enroll-HD

There are currently 58 clinics across 2 countries participating in Enroll-HD in North America.

Watch a webinar on Enroll-HD here.

We Can Never Lose HOPE…

 

June 22, 2022 by
HD Clinical Trials

Clinical Trial Phase 2 Begins for Novartis Huntington’s Disease Drug Branaplam

     

Good News for the Huntington’s Disease Community from Novartis Pharmaceutical Company

On December 16, 2021,  Novartis was granted by the US Food and Drug Administration (FDA) the Fast Track designation for branaplam (LMI070) for the treatment of Huntington’s disease (HD). Fast Track designation facilitates the development and expedites the review of drugs to treat serious conditions and fill unmet medical needs. Branaplam is being developed as a potential first in class orally administered disease modifying therapy for HD.  See News Release 

Branaplam is an oral drug that was originally developed by Novartis to treat a childhood disorder called spinal muscular atrophy. It was also found to lower huntingtin protein by interfering with the genetic “recipe” in a process known as RNA splicing.

Information provided by:
Novartis ( Novartis Pharmaceuticals )

“This is the first study of branaplam in adults with Huntington’s Disease (HD) to determine the correct dose required to lower mutant huntingtin protein (mHTT) levels in the cerebrospinal fluid (CSF) to a degree expected to be efficacious over longer periods of time.

This study is a randomized, double-blind, placebo-controlled study which will be conducted in approximately 75 early manifest HD participants.”

Actual Study Start Date  : December 8, 2021
Estimated Primary Completion Date  : February 17, 2025
Estimated Study Completion Date  : February 17, 2025

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

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

 

 

January 13, 2022 by
HD Advocates, Love

Cheers & Blessings, Trey Gray

CELEBRITY DRUMMER ROCKS HUNTINGTON’S DISEASE AWARENESS

NEW HARTFORD, NY – With more than three decades in the music business, renowned drummer, Trey Gray, is beating more than just drums, he is beating the odds. Gray found his passion for music at the tender age of five.  In his early 20s, he relocated from South Bend to Nashville to pursue a professional career as a drummer. He played in local honky-tonks before landing an audition with Faith Hill, which became a huge turning point in  his career.                     

After seven years with Hill, he began to notice changes in his body. In 2003, Gray’s life changed forever when he was diagnosed with a genetic condition known as Huntington’s Disease (HD). What is Huntington’s disease The neurological disorder, characterized by the degeneration of the brain’s nerve cells, deteriorates a person’s cognitive and physical attributes, mimicking symptoms of ALS, Parkinson’s and Alzheimer’s diseases. At the time of his diagnosis 17 years ago,  Gray was given 10 to 15 years to live.

To help with awareness and funds to fight Huntington’s disease, Trey recently started TheTreyGrayFoundation

To read a full article on Trey and watch the newscast video, visit:  Trey Gray-drummer-to-the-stars-diagnosed-with-genetic-disease

 

We Can Never Lose HOPE……

For information on Huntington’s Disease, visit http://hdsa.org

February 18, 2021 by
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…….
August 20, 2020 by
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 HDSA.  It’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…..

July 23, 2020 by
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

 

 

 

 

 

May 31, 2020 by
May is HD Awareness Month

May is Huntington’s Disease Awareness Month

Author Therese Crutcher-Marin

MAY is Huntington’s Disease Awareness Month

My name is Therese Crutcher-Marin and I’m kicking off Huntington’s Disease Awareness Month.  For forty years, I’m a Huntington’s disease (HD) advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   My author website:  https://theresecrutchermarin.com

 #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with HD throughout the month of May.

Many people are not familiar with Huntington’s disease and Juvenile Huntington’s disease (HD) and have never seen a person or child with HD or JHD.

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers – simultaneously.  Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.      

                          There is NO CURE, YET!

10% of all HD cases are children with Juvenile Huntington’s Disease.

                               

We Can Never Lose Hope……

May 3, 2020 by