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

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