Now more than ever your support matters! @hdfcures @marchforscience
For years, Xenazine (tetrabenazine) was the only drug approved by the FDA to treat the chorea associated with Huntington's disease. Now HD families have TWO FDA-approved drugs to treat chorea! Austedo sticks around longer in the body which means it’s potentially easier to dose.It’s very valuable to have options!
The Huntington Study Group did a clinical trial comparing Austedo with Xenazine head-to-head and against placebo as well. Austedo did very well in controlling the chorea. The findings from the Huntington Study Group study led directly to the FDA approving it. As it is FDA-approved, it may be covered by insurance.
The Hereditary Disease Foundation (HDF) is honored to take part in the historic meeting of Huntington's disease families with Pope Francis at the Vatican in Rome on May 18, 2017. This landmark event brings international attention to the tremendous suffering of HD patients and families throughout the world and particularly South America.
The global HD community coming together with Pope Francis will help dispel the stigma and fear that multiply the suffering of patients and families with HD. By mobilizing action to improve the lives of HD families, we offer hope and sustenance for the future.
Even today, worldwide, men, women and children with HD are still hiding in the shadows. Huntington’s disease is a family disease affecting those with the disease and all other family members.
Families often feel shame and embarrassment about the illness. Its unique combination of symptoms affecting movement, mood and memory attacks our humanity so patients and families face tremendous challenges. In many cases, patients and their families are forced to live on the fringes of society due to fear and misunderstanding.
Nancy Wexler, Ph.D., President of the Hereditary Disease Foundation, will be attending this historic meeting with Pope Francis. Since 1979, she has led the international team working with Venezuelan Huntington's disease families. Venezuela has the world’s highest prevalence of Huntington's disease. Dr. Wexler has assembled a family tree encompassing more than 18,000 individuals over 10 generations. With the extraordinary collaboration of the Venezuelan families, the Hereditary Disease Foundation has made crucial medical and scientific discoveries. The Venezuelans’ critical contribution allowed the Hereditary Disease Foundation, in 1983, to find the first DNA marker for any genetic disease. A decade later the Hereditary Disease Foundation discovered the HD gene itself. The HDF’s discoveries launched the Human Genome Project. The Hereditary Disease Foundation acknowledges the Venezuelan families publicly for all they have helped to accomplish. They changed the face of medicine today. Dr. Wexler continues her work as a passionate scientist and advocate for treatments and cures for HD.
Margot De Young, M.D., who, with the support of the Hereditary Disease Foundation, created and directs the Casa Hogar de Amor y Fe, a clinic and nursing home in Maracaibo, Venezuela, has also been invited. The Casa Hogar provides integrated and unique medical care for treating people with Huntington's with love, dignity and respect. Sir Michael Rawlins, M.D., an active HD researcher and advocate, will attend as well.
We are grateful to Charles Sabine, of London, former NBC war correspondent and television journalist; neuroscientist Ignacio Munoz-Sanjuan, Ph.D.; and Elena Cattaneo, Ph.D., distinguished Huntington's researcher in Milano and Lifetime Senator in the Italian Parliament, for organizing this event.
Details for this historic meeting between the Huntington's disease community and Pope Francis are being finalized. Please check www.HDdennomore.com for further developments.
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.
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!
Amazon is celebrating its #1 ranking in customer satisfaction by the American Customer Satisfaction Index! Today, March 16, Amazon will donate 5% (10 times the usual donation rate) of the price of your eligible AmazonSmile purchases to Hereditary Disease Foundation. (This offer expires tonight at 11:59 PM Pacific Time.)
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
Does your employer offer a matching gifts program? If you are affiliated with a company that provides matching funds for charitable donations by employees, please check with your company’s human resources office or your employee manual. This can be an effective way to double or even triple your gift, whether on a one-time basis or as an annual gift commitment.
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.
Today is Rare Disease Day. This year's global theme is RESEARCH. Please support the Hereditary Disease Foundation to accelerate the research towards treatments and cures for Huntington's disease and related disorders. Every dollar counts!
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!
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.
Thank you to our supporters, friends and family for another year of success and promise! We can't accomplish what we do without YOU!
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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.
We will miss Jack Rudin, a longtime friend, supporter and member of the Hereditary Disease Foundation's Lifetime Directors.
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.