Help 4 HD Live!

Monday, October 24, 2011 - Our incredible special guest is Dr. LaVonne Goodman from HD Drug Works. Though the HDSA has provided the "A Physicians Guide to the Management of Huntington's Disease" for more than a decade (3rd edition recently available), there have been no published guides that have been peer-reviewed by physician leaders from the EHDN or HSG.  Fortunately over the last 3 years both...

Monday, October 17, 2011 – Our incredible special guest is Frances Saldaña Advocacy Chairman for the HDSA OC Chapter; Patient Advocacy Committee Member with the Sue and Bill Gross Stem Cell Research Center at UC Irvine; and she was Keynote Speaker at the World Symposium of the Huntington Study Group is October this year. Frances’ journey as an advocate for Huntington’s disease patients started thi...

  Tuesday, October 11, 2011 at 6:30 pm ET/11:30 pm UK time - Our incredible special guest tonight is Matt Ellison, founder of HDYO (Huntington’s Disease Youth Organization). Launching in January 2012, HDYO is an organization that will focus specifically on supporting young people (kids, teens and young adults), all around the world, that are impacted by Huntington’s disease. The HDYO goal is to cr...

Monday, October 10, 2011 - Our incredible special guests tonight are Jane Paulsen and Stacie Vik from the University of Iowa. UI is currently recruiting individuals who have shown features of JHD before the age of 20 to be a part of a Natural History Study to research the effectiveness of clinical measurements relating to Juvenile Hun tington’s Disease. This study will compare the current adult ve...

Tuesday, October 4, 2011 – Tonight is the special premier of The HD View a new HELP 4 HD pilot program where we will be discussing current topics and concerns of the JHD and HD community. The goal is to get you talking about what matters to you. Let’s start talking about the unspoken issues that affect our H'Dears. It's time to step out of our comfort zone and talk about the real issues. Our incre...

Tuesday, September 27, 2011 - Our incredible special guest is Joe Giuliano, Director of Clinical Operations at CHDI Foundation, Inc. He received his degrees in Chemistry and Nursing at the Catholic University of America in Washington, DC and trained in the Six Sigma and Lean Six Sigma methodologies. He applies these skills to develop more efficient clinical trial management processes. He joined CH...

Tuesday, September 12, 2011 – Our incredible special guest tonight is Lauren Holder, woman on a mission to bring JHD/HD awareness and advocacy to the World. She is Chapter President of the HDSA North Carolina Chapter in Mebane, NC. She is also participating in the PREDICT-HD Study because she wants to contribute to finding treatments and a cure for HD. “Do it and help the HD community,” she says,...

Tuesday, September 6, 2011 - Our incredible special guests tonight are Chris and Lorraine Stiehl who are the Patient Advocate Coordinators for CIRM - the California Institute for Regenerative Medicine - the state stem cell agency. This agency was created by Proposition 71 in 2004, when California voters overwhelmingly authorized a ten year bond issue of $3 billion for stem cell research. www.cirm....

Monday, August 29, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time– Our incredible special guest tonight is Diana Dunkelberger from the Paul Muchowski Lab at the Gladstone Institute, UC San Francisco in California. She recently received the HDSA Donald A. King Student Fellowship which gave her the financial resources to dedicate her summer to HD research. Diana aspires to become a Neurologist and c...

Our incredible special guest is Elisabeth (Lisa) de Blieck, MPA CCRC is a Program Manager at the Clinical Trials Coordination Center (CTCC), which is part of the Center for Human Experimental Therapeutics at the University of Rochester. Ms. de Blieck has over 20 years of experience in administrative project management and clinical trials coordination. She has been the senior project manager for se...

Monday, August 15, 2011 – Our incredible special guest tonight is James Valvano and it’s time for an update about his international film project “The Faceless Faces of Huntington’s Disease: I am No Longer A Faceless Face”. He has recently returned from New York where he filmed two of his A-Team members. This is the first of many segments that need to be filmed. What started out as a short film tha...

Monday, August 8, 2011 – We have an incredible line-up tonight to kick-off the Help 4 JHD Premier with some amazing special guests. Jacey Mukka and Jane Mervar are here to give us an update on the JHD Iniative; Carla Krull from Southern California is here to talk about 2011 HDSA Convention and BJ Viau is here to give us an update on the incredible work he is doing with our HD youth. Tune in for a...

Monday, August 1, 2011 – Our incredible special guest tonight is Dr. Diana Rosas, MD, Director, Center for Neuro-Imaging of Aging and Neurodegenerative Disease. Dr. Rosas and her team have focused primarily on the development of biomarkers for use in the study of neurodegenerative diseases, to better characterize progression, to better understand genotype/phenotype correlations and to apply novel...

Monday, July 24, 2011 – Our incredible special guests tonight are Anne Leserman and Pat Ryan from the University of Iowa. Pat is the research coordinator for PREDICT-HD at the UI, and Anne is PREDICT-HD's recruitment coordinator. PREDICT-HD is an observational study of healthy persons who have been tested for the Huntington disease gene expansion but have not been diagnosed with any symptoms of th...

Monday, July 18, 2011 – Our incredible special guest is Dr. Merit Cudkowicz who is the Julieanne Dorn Professor of Neurology at Harvard Medical School. Dr. Cudkowicz's research and clinical activities are dedicated to the study and treatment of patients with Huntington's Disease and amyotrophic lateral sclerosis. Dr. Cudkowicz directs the Massachusetts General Hospital Neurology Clinical Trials Un...

Monday, July 11, 2011 - Doug Lowell is the president of  Find A Cure Panel.  A division of Sample Czar. Find A Cure Panel specializes in online patient research for serious diseases including HD. More specifically, finding people to participate in online patient research. FACP clients are university researchers and pharma. Essentially, FACP is a platform for people to share their opinions and expe...

Tuesday, July 5, 2011 – Our incredible special guest is Giovanni Schifitto, MD, MS, Associate Professor of Neurology and Imaging Sciences and Associated Co-Director of the Clinical Research Core of the Clinical Translational Science Institute at the University of Rochester. He is trained in Neurology and Experimental Therapeutics. Dr. Schifitto has been primarily investigating the neurological com...

Monday, June 27, 2011 - Our incredible special guest is Stacy Brookhyser (CAG 42), mother of twins free of HD. She is a super duper proactive HD warrior who is spreading the word about a new procedure to stop HD in its tracks. Planning an HD-free family with IVF/PGD Yes, you can stop Huntington's Disease in the future generations of your family!  With the help of skilled medical professionals, YOU...

Monday, June 20, 2011 –Our incredible special guest tonight is Dr. Martha A. Nance, director of the HD Center of Excellence at Hennepin County Medical Center since 1991. She received her BS from Yale University and her MD from Medical College of Virginia. She completed training in Neurology and in Genetics from the University of Minnesota, and now is an Adjunct Professor in the Department of Neuro...

Monday, June 13, 2011 – Our incredible special guests tonight are Will Huff from Grass Roots Research & Education in Goleta and Liani Johnson, founder of Cannabee Products Inc. in Palm Springs. Both are California medicinal cannabis specialists. We will be talking about the history of Cannabis and the different cultures that have utilized its medicinal properties. We will learn about the canna...

Monday, June 6, 2011 – Our incredible special guest is Steven Hersch, MD, PhD, Professor of Neurology at Massachusetts General Hospital and Harvard Medical School; Director, Laboratory of Neurodegeneration and Neurotherapeutics, MassGeneral Institute for Neurodegeneration; Director, New England HDSA Center of Excellence for Huntington’s Disease at MGH; Co-chair, Huntington Study Group; Principal I...

Sunday, May 29 - Our incredible special guests are James Valvano (WeHaveAFace.org) and his A Team comprised of an incredible team of individuals within the Huntington's disease community. These individuals have joined the project to promote the film documentary, and to continue to provide valuable support to others within the JHD/HD community. Advocacy for Huntington's disease is a key part of our...

Monday, May16, 2011– Our incredible special guests today are Jacey Mukka, Jane Mervar and Jonathan Monkemeyer. Jacey Mukka – will discuss the JHD Initiative, LLC. (Juvenile Huntington's Disease Initiative). Jacey is our very first JH'Dear on Help 4 HD. We are thrilled to have her premiere on the program. Every JHD is a Super Hero. Visit http://jhdkids.com to see how you can help. Jane Mervar - is...

Monday, May 9, 2011 - Our incredible special guest is Ira Shoulson, MD Professor of Neurology, Pharmacology and Human Science and Director of the Program for Regulatory Science and Medicine (PRSM) at Georgetown University – new full-time academic positions effective January 1, 2011.  Previously, Dr Shoulson was the Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology,...

Monday, May 2, 2011 - Our incredible special guest is Jane Kogan, HDSA Advocacy Manager. She is going to give us the complete explanation of the Huntington's Disease Parity Act: S. 648/HR 718 and we will talk about many facets of HDSA's National Advocacy Program. May is Huntington's Disease Awareness Month. We are going to kick it off right by talking about a new HDSA campaign "Let's Talk About Hu...