Browsing Category

HD Advocates

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-jsimpson@hdsa.org

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

HD Advocates

Trey Gray-Huntington’s Disease Philanthropist

Paul Erdman Band

I admire Trey Gray, the musician, father, Huntington’s disease (HD) advocate and a very kind, gentle soul.  He has done so much for the HD community and continues to do so through the Huntington’s Disease Foundation that Trey, Doug Michael and Anett Pappas founded together in 2015. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity. https://www.huntingtonsdiseasefoundation.org

Trey Gray is a professional drummer. He has played for Brooks ‘n Dunn, Ronnie Dunn, Reba McEntire, Faith Hill and Jewel, just to name a few.  In 2003, he was diagnosed with Huntington’s disease and his 3 children have a 50/50 chance of inheriting this disease too. His family members (mother and uncle) have both died of Huntington’s disease and he witnessed the pain and struggle as they went through each dreadful phase of HD. No person should have to go through that experience, which drove Trey into finding positive ways into turning his disease into something positive and inspirational. His new CD is available:  The Journey-cd-pre-order-ships-in-april.

I try and keep track of what Trey’s up to as a drummer and in his private life.  He shares his personal life on his Facebook wall https://www.facebook.com/trey.gray.564 and his mantra is “I’m grateful for today“.

                   

 

Trey wrote a book jacket comment that appears on the back on my nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

100% of the profits from the book are being donated to the nonprofit, Huntington’s Disease Society of America.  Author website: http://www.theresecrutchermarin.com

To date, John and I have donated $14,100.00 to HDSA which is the profit from the book since it was published.

Fundraising, HD Advocates

Trey Gray-Drumming Up Huntington’s Disease Awareness

Trey Gray, a famous drummer, and his friends held a special evening at the Vegetable Buddies establishment in South Bend Indiana http://buddiesdtsb.com/ last October.  The band hosted a concert, and because of his notoriety, Trey raised $50,000.00. These dollars are  being donated to the nonprofit Trey started in 2015, the Huntington’s Disease Foundation.

The Huntington’s Disease Foundation was founded in 2015 by co-founders Trey Gray, Doug Michael and Anett Pappas. The Foundation is recognized and registered in Texas as a 501 (c) (3) non-profit charity.   The Huntingtons Disease Foundation

To watch the television news report regarding Trey’s concert, please click on link below:

https://www.abc57.com/news/professional-drummer-from-south-bend-raises-money-for-huntingtons-disease

We Can Never Lose HOPE….

Trey wrote a book jacket comment that appears on the back cover of Watching Their Dance.  100% of the profits are being donated to the nonprofit, Huntington’s Disease Society of America, HDSA.  

The book is available on Therese’s author website http://www.theresecrutchermarin.com & many book websites like Amazon

HD Advocates

Update on Trey Gray-Musician, Father & HD Advocate

Trey Gray, celebrity, talented drummer who has played with many famous musicians like Faith Hill, Reba McEntire and Brooks & Dunn is also a Huntington’s disease advocate.  He tested positive in 2003.

In 2017, Trey was kind enough to write a book jacket comment that appears on the back cover of my book, Watching Their Dance. His comment: “Tears, laughter, blessings, and hope…….an amazing story that will touch, and help, I pray, everyone who reads it”.   What is HD?

Trey is engaged to Jess Lucille who is also a musician in the StarHeart band.  They have a son, who is cute as a button.

To watch the Artist Spotlight interview with Trey, go to https://www.youtube.com/watch?v=rZGFROA-4yA#action=share

The picture above includes:  Chris Chapman, Joe BishopPaul Erdman and Trey Gray.

We Can Never Lose HOPE………..

    

100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon.com and many other book websites.