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HD Advocates

RN’s at HDSA Centers of Excellence Assist Huntington’s Families

Another member of the HDSA Centers of Excellence multidisciplinary care team is the registered nurse. The HDSA Center of Excellence at the University of California, San Francisco has a nurse, Cecilia Alagappan who is part of the team at the HD Clinic.

She has wide experience with the care of those with neurodegenerative disorders, and has been a leader of our Center of Excellence since its inception. She provides critical expert and practical advice to families dealing with common Huntington’s disease (HD) issues, including coping with behavioral symptoms like irritability or loss of motivation, weight loss, or problems with swallowing.

Cecilia also assists patients and physicians navigate the health care system to obtain needed medications. As with all the disciplines on the multidisciplinary care team, their goal is to help HD families have the highest quality to their lives on their HD journey.

Find a HDSA Center of Excellence in your area here

We Can Never Lose HOPE…..

September 13, 2023 by crutcht

HD Advocates

Huntington’s Disease Advocate-Kate Miner

Kate at a HDSA Convention with Michael Miller

Kate Miner is my hero for many reasons. She’s beautiful, a talented actress, musician and dedicated Huntington’s Disease advocate. Her family discovered a few years back that Huntington’s disease ran in the family. Her mother and two sisters tested gene-positive, while she did not.

Jenne Colar-Dark, Kate’s sister, is also an advocate and is on HDSA Board of Trustees.

I loved Kate in the TV series, Shameless, and I hope to see her again in another TV series.

Watch Kate Miner’s passionate video about Huntington’s disease.

Kate is involved in the HDSA Annual Freeze HD event every year that takes place in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America. Last year, the 8th Annual Freeze HD raised more than $200,00.00. She brings her celebrity friends who are very generous.

Thank you Kate, for all you do for the Huntington’s disease community and many thanks to all who supported the Freeze HD event.

We Can Never Lose HOPE…

To help in the fight against Huntington’s disease, please make a donation to Huntington’s Disease Society of America. Every dollar helps provide services and programs that help HD families have a highest quality to their lives on their HD journey. Thank you.

March 29, 2023 by crutcht

HD Advocates, HD Research

Donate to Huntington’s Disease Research

Author Therese Crutcher-Marin

I’m a Huntington’s disease (HD) advocate because my three sisters-in-law, Lora, Marcia and Cindy were victims of the cruelest disease on the planet. I hope to witness a therapy or even a cure in my lifetime so I chose to be involved with the nonprofit, Huntington’s Disease Society of America (HDSA) in this quest.

Research is so important to fight the disease and HDSA funds fellowships/grants; the Human Biology Project, Donald A. King Summer Research Fellowship, Berman-Topper HD Career Development Fellowship (three year grant).

The HDSA Marker-The 2022 Research Report is now available. The latest issue of The Marker is now available for you to review HDSA’s commitment to HD research and look ahead to potential breakthroughs in 2023.

A quote from Dr. Marie Didiot, grant recipient of the Human Biology Project. “Fundraising is one of the major challenges in research. Providing awards in the HD community, as does HDSA, is encouraging researchers to focus on HD and attracted more students with new potential and skills.“

Please make an end of the year donation to the nonprofit, HDSA, to continue funding research.

We Can Never Lose HOPE…….

December 28, 2022 by crutcht

HD Advocates

A Workshop for Folks with Huntington’s Disease, Their Family & Caregivers

Join us on Thursday, July 14, 6-7:30 p.m., for an online workshop on fostering trusting relationships and improved communication with medical personnel, hosted by Dr. Kae Bendixen.

The workshop is intended for people with Huntington’s Disease (HD) and their caregivers and support networks. Topics will include preparing for medical visits, addressing communication challenges unique to HD, giving voice to patient and caregiver needs and fostering collaborative relationships with medical personnel. Structured communication tools designed specifically to meet the needs of people with HD will be provided to attendees and discussed at the workshop. The workshop will also include time for questions and discussion.

To register for the July 14 workshop, please visit: https://hdsa-org.zoom.us/meeting/register/tZcuf-qqpzgoHdIQ30icg8YJDaO3l7wh1FeS. Space is limited!

Information about the Presenter:

Dr. Kae Bendixen is a retired physician from the San Francisco Bay Area. She has been diagnosed with HD. She comes from an HD family and has experience as a primary caregiver for her mother. She worked as an obstetrician/gynecologist for over twenty years and has professional experience in medical ethics and teaching medical professionals how to improve their communication with patients.

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 an author. In the picture, I’m with Jay Denhart-Lillard, secretary/communication committee leader for the SF Affiliate.

July 6, 2022 by crutcht

HD Advocates

Trey Gray-A Champion for Huntington’s Disease

May is Huntington’s Disease Awareness Month!!

I love Trey Gray and I consider him a Champion for Huntington’s disease (HD) like Michael J. Fox is for Parkinson’s disease.

HD is an autosomal dominant trinucleotide repeat disorder that causes the progressive degeneration of the basal nuclei. This degeneration leads to clinical symptoms affecting voluntary movement, cognitive impairment, and psychiatric disorders. It’s rare, genetic and fatal and has all the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time. There is NO CURE. Only 41,000 American’s have the disease and 200,000 live at risk and 16% of all cases are children with Juvenile HD.

Watch the Trey Gray’s video, Beating the Odds of Huntington’s disease here.

Thank you Trey for all your advocacy work you do and have done for the HD community! #LetsTalkAboutHD

Trey was diagnosed 19 years ago and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. He said, “I’m definitely beating the odds. And that’s a good thing. I want to be there for people to say, ‘You can do this. You can have an okay life!” Trey Gray Foundation

Trey played with Faith Hill on her climb to fame for seven years and then played with Jewel. He has been the drummer for the popular country duo, Brooks and Dunn for many years.

Please help the nonprofit, Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate fight this disease by donating to fund research, fund two (2) HD clinics at Stanford and UCSF Medical Center, three (3) local HD support groups, online support groups, and many free online resources.

Thank you in advance. Please Make your donation here.

May 12, 2022 by crutcht

HD Advocates

Kate Miner and Huntington’s Disease

Kate at a HDSA Convention with Michael Miller

May is Huntington’s Disease Awareness Month!

Kate Miner is from a Huntington’s disease (HD) family. She is an actress, musician, singer and advocate for HD. Her mother has the disease and her two (2) sisters are HD positive. Kate’s sister, Jenne Coler-Dark is on the Huntington’s Disease Society of America (HDSA) Board of Trustees. Kate and her Hollywood friends started the HDSA HD FREEZE fundraiser and this year will be its 8th year. Before the Pandemic, approximately $400,000.00+ was raised and the last two years it was virtual and raised approximately $200,000.00. Thank you Kate for the advocacy work you do for the Huntington’s disease community

May is HD Awareness Month. Huntington’s disease is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time and there is NO CURE. 41,000 American’s have the disease & 200,000 live at risk.

Please consider donating to the nonprofit, HDSA, to help fight the disease by conducting research, funding HD clinics and HD support groups around the country, and many free online resources. Since there is NO CURE, HDSA provides services/resources to help HD families have the highest quality to their lives.

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

May 10, 2022 by crutcht

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.

July 28, 2021 by crutcht

HD Advocates

Huntington’s Disease Champions

There are many Huntington’s disease (HD) champions among us and many that are gone from our sight; some are celebrities, some everyday people who are tirelessly heightening awareness of HD.

San Francisco Bay Area Affiliate Volunteers

Some champions among us are: Musician Kate Miner, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler, movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Louise Vetter and Drummer Trey Grey. (There are others that belong on the list) Those gone from our sight but not gone from our hearts are Woody & Marjorie Guthrie, Dr. George Huntington.

Lora, Marcia & Cindy

My sisters-in-law, Lora, Marcia and Cindy, are my champion’s as they are the driving force behind what I do for the Huntington’s disease community.

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. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on my author website https://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from my book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).

Subscribe to Therese’s Blog via Email

July 21, 2021 by crutcht

Grief, HD Advocates

Channel Your Grief Into Action

Author Therese Crutcher-Marin, HD Advocate

I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.

The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.

Genetech roche-drops-huntingtons-disease-trial-with-once-promising-drug-tominersen/and

Wave Life Sciences news-release-provides-update-phase-1b2a-precision-hd.

So, let’s Channel our grief into Action! We are HD STRONG!

Each one of us can CHANNEL our GRIEF into ACTION. The following are suggestions of ways to get involved with the nonprofit, Huntington’s Disease Society of America (HDSA):

There are other Huntington’s disease organizations you can be involved with:

Help 4 HD-.Help 4 hd

Huntingtons Disease Foundation

We Can Never Lose HOPE………….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Visit my website at: https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

April 8, 2021 by crutcht

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