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HD Advocates

HD Advocates

HDSA Pacific Region Throws Down the Gauntlet

Anita Dominguez and Denny Cone, HDSA Pacific Regional Officer and Staff, have thrown down the gauntlet challenging Chapters/Affiliates, in the region, to see who can recruit the highest number of new volunteers in six weeks beginning January 18th, 2021.

The challenge for a Recruitment Blitz may be focused on one specific volunteer need for Teams, Sponsors or Participants or it could be all encompassing to recruit for all areas of Team Hope Walk.  Recruitment for volunteers to work on Committees and to fill board positions are also important to the Chapters/Affiliates. About the Pacific Region

The San Francisco Bay Area Affiliate team members accept the challenge and are busy planning the strategies to win this challenge!  In California, the SF Affiliate extends from Santa Rosa to Gilroy, including the city of San Francisco, Oakland, and San Jose.

If you are interested in volunteering in the Bay Area, please visit https://theresecrutchermarin.com/volunteerism/

The following is a list of the Chapter/Affiliates that will be competing against one another.

  • Arizona Chapter
  • Las Vegas Affiliate
  • Los Angeles Chapter
  • Northern California Chapter
  • Orange County Chapter
  • Rocky Mountain Chapter
  • San Diego Chapter
  • San Francisco Affiliate
  • Southern Idaho Affiliate
  • Utah Chapter
  • Washington State Chapter

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger.  Visit my  Author Website

HD Advocates, HDSA San Francisco Bay Area AFFILIATE

HDSA San Francisco Bay Area Affiliate Celebrates One Year

The San Francisco Bay Area Affiliate, one of the 55 Chapters/Affiliates across the U.S., of the nonprofit, Huntington’s Disease Society of America,  is celebrating its first year of operation.  Despite the pandemic, team members shifted to zoom monthly meetings, virtual events and have developed a Strategic Plan for 2021 to help in the fight against Huntington’s disease, provide Education Days at Stanford & UCSF Center of Excellence, organize outreach projects so HD families can find services to help their family.   

I’m Therese Crutcher-Marin, the Chair for the Affiliate.  Amy Fedele 

HD Advocate Amy Fedele

is co-chair and Cole Holderman is secretary. 

On Saturday, January 11, 2020, the first Affiliate meeting was held at UCSF with 22 attending from Genetech, HOPES, community folks, UCSF & Stanford Centers of Excellence, and HDSA social workers/staff.  

Author Therese Crutcher-Marin, HD Advocate

I want to thank everyone involved in the Affiliate in 2020 for their time and dedication and I’m excited to kickoff 2021 at our first meeting on Wednesday, January 6, 2021.  At this first meeting of the year, we’ll be discussing the strategies to implement the 2021 Strategic Plan to outreach to the HD community in the Bay Area.  

We Can Never Lose HOPE………

Visit my My Author Website and check out my nonfiction  book,  Watching Their Dance.

 

HD Advocates

Kate Miner-An Advocate for Huntington’s Disease

Kate Miner is a champion for Huntington’s disease and an amazing multi-talented woman.

On December 9, 2020, TVOM, an entertainment online magazine, wrote a story about her:

10 Things You Didn’t Know About Kate Miner”

Here’s one of the 10:

8. Huntington’s Disease Runs In Her Family

“No matter how healthy of a lifestyle you try to lead, there will always be things that are out of your control due to genetics. A few years ago, Kate found out that Huntington’s Disease runs in her family. According to the Mayo Clinic, “Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.” Kate tested negative for the gene that carries the disease, but her sisters tested positive.”    To read the full article on Kate, visit: https://www.tvovermind.com/kate-miner/    

Kate at a HDSA Convention with Michael Miller

Kate is a multi-talented woman; she’s a musician, singer, actress and Huntington’s disease advocate.Kate organizes the HD FREEZE Gala every year in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America.  Her celebrity friends attend and are very generous. In 2020, the event raised over $200,000.00, even with the pandemic raging.  In 2019, HD FREEZE raised  $420,000.00.

2020 HD Freeze             2019 HD FREEZE

We Can Never Lose HOPE………….

HD Advocates

Huntington’s Disease Awareness Month-Drummer Trey Gray


Sixteen (16) years ago, Trey Gray was diagnosed with Huntington’s Disease (HD) and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. Visit http://hdsa.org for information on HD.  

“I’m definitely beating the odds. And that’s a good thing,” he shares. “I want to be there for people to say, ‘You can do this. You can have an okay life!'”  

There are hero’s in our world and Trey is one that the Huntington’s disease (HD) community embraces with love.  To watch the Trey’s video, “Beating the Odds of Huntington’s Disease”, visit:  Trey’s video

Bio on Trey: Trey Gray was born in Indianapolis, IN, USA as George Lewis Gray, III to his father, George and mother, Cindy. His passion for drums started at the early age of 6 and it was then that he knew his destiny. Gray had his share of rough starts yet always stayed focus on what he loved the most.

We Can Never Lose HOPE……….   

Author Therese Crutcher-Marin

HD Advocates, Love

Huntington’s Disease Advocate Marjorie Guthrie

    

Phyllis Marin

The following is a letter I received from Marjorie, Woody Guthrie’s wife in 1978 when my then fiance, John Marin and his three (3) sisters discovered the family secret; their mother, Phyllis Iva Cahoon Marin, had Huntington’s disease (HD). What is HD?

Marjorie and five other volunteers succeeded in forming the Committee to Combat Huntington’ s Disease(CCHD), which was incorporated in the state of New York on September 18, 1967, as a nonprofit voluntary health agency. To read about Marjorie, go to https://hdsa.org/about-hdsa/hdsa-history/  The CCHD, later evolved into the nonprofit, HDSA, after her death in 1983. http://www.hdsa.org    

___________________________________________________________________________________________________

Dear Therese, 

I wanted to answer your letter to us personally because I really do appreciate your thoughts and the fact that you are not deserting your young man and are looking for ways to HELP!  That is a wonderful attitude….and I am sending you a packet of information about CCHD and the work we are doing.

I hope that after you read all this you might be “inspired” to JOIN WITH US….and perhaps in time….you might event help us build a chapter in your area.  The closest to you is in San Francisco.  But…for now…read…and learn what is going on and when you can…get involved. 

We need FRIENDS!  No one asks the cancer patients to go out and help…and we must realize that most of the HD families who are burdened with the problems of HD can not do all that must be done!  We look for friends, relatives, people who really care and you just might  be one of those!   I will be anxious to hear from you…..Until then….

LOVE & PEACE! In the NEW YEAR!

Signature of Marjorie Guthrie

___________________________________________________________________________________________________

We Can Never Lose HOPE…………

Therese at the 2018 HDSA Annual Convention in LA.

I became an HD Advocate the day I decided to marry John.  I wrote the nonfiction book, WatchingWatching the Dance Huntingtons Disease Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to help in the fight against HD.

100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is:  https://www.theresecrutchermarin.com

 

 

HD Advocates

Trey Gray-A Drummer, Huntington’s Disease Advocate, Father, Philanthropist & an Inspirational Guy

    

Paul Erdman Band

I love to post about Trey Gray because he is such an inspiration, a kind person and, often says, he is GRATEFUL!   He graciously wrote a book jacket comment that appears on the back of my nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 

I asked him not too long ago when he would come out West so the Huntington’s disease (HD) community could meet him and listen to his music.  Unfortunately, it’s not in the cards right now.

Trey’s HD diagnosis came in 2003, and he has beaten the odds because he is asymptomatic after 19 years.  Wow is all I can say!  (Trey’s mom, Cindy, had HD).

What is Huntington’s disease?  https://www.huntingtonsdiseasefoundation.org/life-with-hd-2

Marcia and Cindy, my two sisters-in-law to die from HD complications, struggled with HD for approximately 16-17 years and their quality of life the last five years was not good.

Trey’s son Max.

I hope Trey keeps pounding on those drums, doing what he loves, and keeps us all inspired by his HD advocacy, positiveness, philanthropy work he accomplishes through the Huntington’s Disease Foundation he and two friends started.  https://www.huntingtonsdiseasefoundation.org/

Trey’s Facebook wall is:  https://www.facebook.com/trey.gray

We Can Never Lose HOPE….

 

Watching Their Dance can be found on Amazon around the world & many other book websites. It’s available as an e-book also.   100% of the profits are being donated to Huntington’s Disease Society of America (HDSA).  I’ve donated over $14,000.00 so far from the book to HDSA.

Read a book review from Kirkus:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

HD Advocates

The Woody Guthrie Advocacy Award

This year the Huntington’s Disease Society of America (HDSA) Annual Convention was held in Boston MA.  John and I flew to Boston and on Thursday I attended Leadership Day where leaders of chapters and affiliates meet and learn from the HDSA staff. I was able to attend since Amy Fedele, several other Huntington’s Disease (HD) advocates, and myself are organizing a HDSA San Francisco Bay Area Affiliate.

For the next two days, the attendees choose sessions that are of interest; i.e. Ask the Scientist….Anything, Bringing Kids into Your HD Family, Palliative Care, Catapult Your Volunteer Work in Your Community, Growing Up with HD and many other valuable topics. 

On Saturday evening, a Gala is held to close the Convention and HDSA awards are given out by Louise Vetter, HDSA CEO and President, for many categories; Youth Award, Affiliate of the Year Award, Chapter of the Year Award, Marjorie Guthrie Award, Researcher of the Year Award and several others.

HDSA 2019 Convention

It was at this event, I received the surprise of my life. As I sat next to John and Denny Cone, the HDSA Pacific Region Development Manager, Louise said, “The Woody Guthrie Advocacy Award is being given to a a woman who in 1978 her college sweetheart and his three sisters, discovered their mother had Huntington’s Disease……….   My eyes grew wide and I snapped my head toward Denny.  All I remember after that is pushing my chair back, standing like a robot and walking toward the stage.

I’m honored to receive the award and I will continue to be a Huntington’s Disease Advocate until I have no breath in my body.

  

We Can Never Lose HOPE……………

100% of the proceeds from Watching Their Dance is being donated to HDSA to help in the fight against HD.  Since the book was published in April 2017, I have gifted over $14,000.00 to HDSA.

HD Advocates

The 2019 Boston HDSA Annual Convention

Every year, the HDSA Annual Convention keeps growing and I’m always surprised at the number of first time attendees. I find this fact wonderful since those first timers find support, information, and more importantly, they find a welcoming community where they never have to feel alone again. https://hdsa.org/about-hdsa/annual-convention/

The 2019 HDSA Convention kicked off with a Team Hope Walk on Thursday evening which always gets folks fired up!

  

I’ve now attended three (3) HDSA Conventions; 2017-Chicago, 2018-Los Angeles and Boston.

In 2017, John and I were on a three-month Midwest book tour in our RV, as I had just published the nonfiction book, Watching Their Dance.  I sold 63 books at the convention.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

2018 HDSA Convention

2018 Left to right: Anna Canoni, Nora Guthrie, Louise Vetter & Dr. Nancy Wexler

The next year, 2018, the convention was in Los Angeles, and we drove our RV and parked in Dockweiler State Beach for four nights. The beach was only four miles from the Convention Center but it took me 45 minutes to get there.  Traffic was crazy! I sold 55 books that year.

This past weekend, we flew to Boston and while I was busy all day with sessions, John found a coffee shop, a newspaper, a sports bar for lunch, which made his day enjoyable.

I was honored to receive the HDSA “Woody Guthrie Advocacy Award”, and will continue to advocate and help in the fight against Huntington’s disease.  I’m humbled that HDSA felt I was worthy of this award.

Thank you Huntington’s Disease Society of America (HDSA) for guiding the HDSA volunteers with integrity, grace, patience and information to help Affiliates and Chapters be successful in carrying out the HDSA Mission.

HDSA Mission

To improve the lives of everyone affected by Huntington’s disease and their families.

HDSA Vision

A world free of Huntington’s disease.

We Can Never Lose HOPE……………

 

 

 

 

 

HD Advocates

Disability Attorney Allison Bartlett Hired at HDSA

 

HUNTINGTON’S DISEASE SOCIETY OF AMERICA ADDS ALLISON BARTLETT AS MANAGER OF DISABILITY PROGRAMS

New York, NY (June 11, 2019) – The Huntington’s Disease Society of America (HDSA) is excited to welcome Allison Bartlett, Esq. to the newly created position of Manager of Disability Programs. Ms. Bartlett is a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease, through the complex Social Security disability system. She comes to HDSA from the Caring Voice Coalition, where she represented patients with rare diseases, including HD, in their navigation of the legal processes associated with securing disability support.

“We are thrilled to welcome Allison Bartlett to the HDSA team,” said Louise Vetter, HDSA’s President & Chief Executive Officer. “She is a passionate advocate for HD families, and working with HDSA’s Centers of Excellence and social workers, her experience and insight will be a valuable resource in community efforts to remove barriers to accessing Social Security benefits.”

Allison has more than ten years of experience in the non-profit field, working on a variety of issues including human rights, domestic violence, social justice and environmental protections. Allison holds a J.D. from the University of Cincinnati College of Law and a B.A. in International Affairs from James Madison University. She is admitted to the Virginia Bar.

To contact Allison regarding disability inquiries she can be reached at [email protected] and 212-242-1968.

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.

https://www.ssa.gov/disability/

http://www.hdsa.org

We Can Never Lose HOPE……………………..

Author Therese Crutcher-Marin

HD Advocates

Congressmen Kinzinger & Pascrell and Senators Cassidy & Gillibrand Introduce ‘Huntington’s Disease Parity Act’

The Huntington’s Disease Parity Act, H.R. 2770, was re-introduced asking to waive the two (2) year waiting period to receive Medicare Benefits when a person with Huntington’s disease (HD) has been determined to be disabled.

As a doc, I know treating a patient in early stages of disease is critical to good outcomes,” said Senator CassidyMaking patients wait two years for treatment through Medicare puts their health at risk and increases the cost of their care. This legislation ensures patients receive the care they need at the most crucial point in their diagnosis.”

To read the full article, go to:  https://kinzinger.house.gov/news/documentsingle.aspx?DocumentID=402061

Huntington’s Disease Society of America (HDSA) has made it very easy to send a letter to your senator/congressmen in your area.  The letter is written and you put your name on it and add a comment if you like.  Go Here:  https://cqrcengage.com/hdsa/app/onestep-write-a-letter?15&engagementId=496303

If you haven’t signed up to be an HDSA E-Advocate please go here:  https://cqrcengage.com/hdsa/app/register?16&m=182462

This is so important to the Huntington’s Disease community.  Please take the time to send the letter. For more information, contact Jennifer Simpson, LCSW, HDSA Senior Manager, Advocacy & Youth Programs.212 242-1968 Ext. 226.  [email protected]

We Can Never Lose HOPE…………

 

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance