Mike Conneally: A world leader in human genetics

We are deeply saddened to say goodbye to our mentor, longtime colleague and beloved friend P. Michael Conneally (Mike), who died on February 17, 2017 at the age of 85.

Mike was a Professor of Genetics at the Indiana University School of Medicine who played a crucial role in almost every aspect of Huntington's disease research starting in the late 1960s. He was one of the investigators who helped make the breakthrough discovery of the genetic marker for Huntington's in 1983. He also participated in the landmark collaborative group that mapped the actual HD gene in 1993. But there was much more.

As a geneticist, Mike early on appreciated the importance of linkage for mapping genes and spent years using traditional genetic markers in an effort to find linkage with the HD gene. When the new DNA markers became available in the late 1970s, he immediately understood their value. He encouraged the HDF to support the search for the gene using these markers at a time when many scientists thought this was premature. He also understood the value of large families for mapping genes. In the 1970s he had begun collecting samples and building pedigrees of HD families in the American midwest. These became the basis of the Huntington's Disease Research Roster at Indiana University which Mike helped establish and which the Hereditary Disease Foundation continues to support. The Roster remains an invaluable resource for investigators.

Mike served on the historic Congressional Commission on Huntington's Disease in the 1970s as a member of the Venezuela Working Group. After Nancy Wexler started the annual research trips to Venezuela in 1981, Mike came along on many of these expeditions, helping with the pedigree of families and entertaining the kids. He also served for many years on the Scientific Advisory Board of the HDF, enlivening many Foundation parties with his wonderful Irish sense of humor, his generosity and his love of life. Mike's legacy lives on in the many generations of students he trained. But the inimitable Mike Conneally in person will be deeply missed.

Click to read his obituary from the Irish Times.

New Policy Development with Crippling Impact for Science and New Medicines!

A 20% cut - $6 billion - in the NIH budget will have devastating effects on the development of effective therapies for terrible fatal diseases. This cut will mean that only 2-5% of approved grants will be funded. Young scientists will be disproportionately affected, essentially guaranteeing a loss of at LEAST one generation of scientists. Philanthropic support is even more critical now with this dire situation in Washington, D.C.

Please PHONE or write your senators and representatives to urge an INCREASE, not a DECREASE, in the NIH budget. Phone calls can make a difference! Even one phone call can help!

For phone numbers online go to www.senate.gov and click on "Find Your Senators"; for representatives go to www.house.gov and click on "Find Your Representative".

Pi-O-Neering the Cure for Brain Disease - Take a Pie in the Face Challenge

The cure for brain disease is in your hands.

Pi-O-Neering gene hunter and trailblazer of the Human Genome Project Nancy Wexler is taking a pie in the face for the cure - and challenges you to do the same. We are SO close to the cure that will help us SOLVE BRAIN DISEASE but we need YOUR help. Join us and spread the word! No pie in the face, please donate to the Hereditary Disease Foundation  #cures, @hdfcures

Exciting research discovery about defective brain process in Huntington’s disease - supported by the HDF!

The Hereditary Disease Foundation awarded a Postdoctoral Fellowship to Govinda Poudel, Ph.D. at Monash University, Melbourne, Australia, to to apply sophisticated computational methods to analyze brain images of individuals with HD.

Friday's Herald Sun announced, "For the first time Monash University researchers used the technique to uncover degenerative brain processes in people with the faulty HD gene, decades before symptoms arise...The preliminary findings, published in Neuroscience Letters, sheds light on how different genes interact to affect processes in the brain that cause symptoms."

Read the full article.

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 www.senate.gov and click on "Senators"; for representatives go to www.house.gov 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!