Don't let Congress repeal the Affordable Care Act!

The Affordable Care Act (ACA), enacted in 2010, has made health insurance available to millions of Americans who were unable to afford it or who had pre-existing conditions that made them uninsurable.

Having HD anywhere in your family’s background made you virtually uninsurable until the passage of the ACA. This included people with symptoms, people at risk for HD or those who took a genetic test for HD indicating that they will get HD in the future.

The expansion of Medicaid under the ACA was also a lifesaver for many of us.

Even before inauguration day, the new Congress is taking immediate steps to deprive millions of us of access to health insurance! They are about to defund the ACA with nothing to take its place!

The HD community can make a difference by calling your senators and representatives and telling them you OPPOSE repealing the Affordable Care Act!

Phone calls can make a difference! Even one phone call can help!

(For phone numbers online go to and click on "Senators"; for representatives go to and click on "Find Your Representative".)

Farewell to Carrie Fisher and Debbie Reynolds

We mourn the passing of our Lifetime Director and beloved friend Carrie Fisher, who died Wednesday December 28 at the age of sixty.

Tragically, her adored mother, the iconic actor Debbie Reynolds, died the following day, undoubtedly of heartbreak.

Carrie Fisher's warrior spirit inspired us to take on scientific challenges just as she took on the challenges of a celebrity family, mental illness, performance on screen and stage, and on the page. 

By writing and performing her struggles, always with her inimitable wit and generosity of spirit, she made it possible for us to be more open about the dark secrets we all share.

Carrie Fisher and Hereditary Disease Foundation founder Milton Wexler were writing pals. She brought drafts of her memoir "Wishful Drinking" to read aloud to him. They laughed together a lot. During his last illness in the hospital, she visited several times, kneeling down beside his hospital bed to whisper, "I love you Milton" into his ear. When he died, she opened her home for a beautiful memorial, attended by friends and supporters of the Hereditary Disease Foundation who were also friends of Carrie's including Berta and Frank Gehry, Quincy Jones, Jennifer Jones, Herbert Pardes, John Mazziotta and Anne Young among many others.

Carrie Fisher was extremely close to her mother, who lived next door to her.   Many who attended Dad's memorial recall Debbie Reynolds - one of the most recognizable stars in Hollywood - standing in a red dress at the door at the end of the ceremony. As people were leaving, she introduced herself and shook hands with each one, saying "Thank you for coming. I'm Carrie Fisher's mother."

Farewell to two awesome, courageous, brilliant women of enormous grace and spirit. We miss you both.

To Billie Lourd, Todd Fisher, Joelle Fisher, and other family members whose lives have been fractured by these two unimaginable losses, our hearts are with you in this time of sorrow.

Another Chance to Watch Profile of HDF President Nancy Wexler on NY1!!

This weekend (Saturday at 9pm and Sunday at 6pm) NY1 will air an hour long special, "One on 1 with Budd Mishkin: Best of 2016."

The special features musicians, writers, politicians, chefs, non-profit executives and many others. A portion of HDF President Nancy Wexler's profile is included in the special.

You can access Nancy's complete profile directly or watch the full "Best of" program.



Anne B. Young receives 2016 Leslie Gehry Brenner Prize for Innovation in Science

Congratulations to Anne B. Young, Vice Chairman of the HDF's Board of Directors and Chair of the Scientific Advisory Board, for her pioneering research on and continued dedication to finding treatments and cures for Huntington's disease! Click here to read more.

President Obama Honors Frank Gehry With Presidential Medal of Freedom

The Hereditary Disease Foundation is thrilled to announce that HDF Board Member Frank O. Gehry has been awarded a 2016 Presidential Medal of Freedom, the nation's highest civilian honor. In a ceremony at the White House on November 22, 2016, President Obama presented the award to Frank and twenty other recipients. Obama's words were as follows:       

"Frank Gehry has never let popular acclaim defy his impulse to reverse convention. 'I was an outsider from the beginning,' he says, 'so for better or worse, I thrived on it.' The child of poor Jewish immigrants, Frank grew up in Los Angeles, and throughout his life he embraced the spirit of a city defined by an open horizon. He's spent his life rethinking shapes and mediums, seemingly the force of gravity itself; the idea of what architecture could be he decided to upend--constantly repurposing every material available, from titanium to a paper towel tube. He's inspiring our next generation through his advocacy for arts education in our schools. From the Guggenheim Bilbao to Chicago's Millennium Park--our hometown--to his home in Santa Monica which I understand caused some consternation among his neighbors, Frank's work teaches us that while buildings may be sturdy and fixed to the ground, like all great art they can lift our spirits. They can soar and broaden our horizons."

We congratulate Frank on this well-deserved and beautiful honor!