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 Cassidy. “Making 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.”
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@example.com
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
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.
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:
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.