Help 4 Hd Live!

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 that James created for the Neuro Film Festival has grown into a world renowned international film project spanning 87 countries. James’ team, (the A-Team) consists of 13 driven individuals who are personally impacted by Huntington’s Disease and who are trying to make the world a better place for all H’Dears. It takes a team to make a project like “The Huntington’s Disease Film Project” succeed, but it takes a great leader to motivate and keep the vision alive. James is “that leader” and we wish him great fortune in order to complete his film. CONTACT James Valvano Writer/Director www.WeHaveAFace.org Email: James@W

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 very fun and informative program on Help 4 JHD!

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 neuroimaging approaches in clinical trials with the overall aim of making them more efficient. Dr. Rosas’ lab has begun to develop models that may explain clinically heterogeneous phenotypes and variability in disease progression. The current models for both disease prediction and prediction of disease progression are insensitive and inaccurate. Dr. Rosas is planning to expand her efforts to include multi-modal and multi-spectral imaging approaches that promise both more precise measurements and may provide novel and important information on the neural underpinnings of HD and their clinical consequences. Dr. Rosas

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 the disease. Study investigators are identifying the earliest signs of HD so future drug trials can be designed to target those early changes and develop treatments that greatly delay the onset of the disease or prevent it altogether. Study staff are looking to recruit and enroll new participants at 28 sites in the U.S., Canada, United Kingdom, Australia and Germany. For more information about PREDICT-HD: Website: www.predict-hd.net Email Anne Leserman: [email protected] Email Pat Ryan: [email protected] Youtube: PREDICTHD

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 Unit and is the Principal investigator of the Phase 3, 2 CARE clinical trial of Coenzyme Q10 in people with HD. She is an active member of the Huntington Study Group (HSG) and has pioneered clinical trials of new therapies for people with HD and other neurodegenerative disorders. In conjunction with the HSG consortium, she is a pioneer in promoting and developing more efficient methods of testing new therapies in people with HD.

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 experiences as to their condition and treatment.  The FACP model is based upon partnering with non profits working in each disease sector and offering them a minimum donation of $X for every completed survey by one of their supporters. The FACP  program has raised tens of thousands of dollars for various non profits.

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 complications associated with HIV infection but he has also been involved with clinical trials in Huntington and Parkinson disease. Dr. Schifitto has been a member of the Clinical Trial Coordination Center (CTCC) at the University of Rochester since 1994. The CTCC provides data management support for a variety of clinical studies including those conducted by Huntington Study Group (HSG). Currently, Dr. Schifitto serves as the CTCC PI of a large efficacy study of high dose Creatine supplementation (CREST-E) for the treatment of HD conducted by the HSG. This is the CREST-E Series Part II. CREST-E stands for Creatine Saf

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 have the ability to prevent your children from inheriting HD. What is PGD After in-vitrofertilization (IVF), embryos can be tested using pre-implantation genetic diagnosis (PGD) to determine their genetic makeup.  When the embryos contain eight cells, they are tested for the HD mutation in the Huntingtin gene.  Only embryos with the unaffected gene are transferred to the mother.  These embryos will never get HD or transmit it to their children.  The procedure essentially eliminates HD from that family line.  Forever! Stacy's website: www.hdfreewithpgd.com

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 Neurology at the University of Minnesota Dr. Nance wrote The Juvenile HD Handbook and was a co-author of the recently revised Physician’s Guide to HD, both published by HDSA. She has served on the Executive Committee of the Huntington Study Group, and as an investigator on a number of HSG clinical trials.  She frequently lectures about HD at local, regional, national, and international patient and professional conferences. She also serves as the Medical Director of the Struthers Parkinson’s Center at Park Nicollet Clinic, a National Parkinson Foundation Center of Excellence, where she maintains an active clinical and res

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 cannabinoid system in neuroprotection and how receptors in the brain are activated to relieve symptoms of pain, anxiety and many other conditions. Only 16 States and DC have enacted laws to legalize medical marijuana and for those who don’t, the MMJ activists are busy educating people about the benefits of this amazing plant. Cannabis has been around for thousands of years, used by cultures around the world for healing, religious ceremonies and everything in between. The plant has been used for clothing, paper, building materials and much more. Tune in for a very interesting and educational program. See some interesting

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 Investigator of the CREST-E study; and Principal Investigator of the REVEAL-HD study.  “The central focus of my professional work is to care for families with Huntington’s disease (HD) and to help develop treatments to slow or cure this fatal progressive neurogenetic disorder.”  Steven Hersch, MD, PhD

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 daily lives. WeHaveAFace.org was founded to increase international awareness of Huntington's disease through a creative, cinematic form - The film:"The Faces of Huntington's Disease: I am No Longer a Faceless Face" The idea for a full-length documentary followed the overwhelming support of the release of the film: "The Faceless Faces of Huntington's Disease" into the NeuroFilmFestival. Join us  for a very enlightening and interesting program.

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 Jacey's mum. We will be talking about her experiences with physicians, some of the obstacles and solutions she has found in treating and caring for her JH'Dears. She is a heroin with a wealth of experience and information to share with all of us. We need to give our JH'Dears a voice. Reach Jane at [email protected]. Jonathan Monkemeyer - is a Translational Research Advocate at Hereditary Disease Circle. His wife Sheryl served to improve the lives of patients, but lost her life to Huntington's Disease. We have much to talk about JHD. Visit www.JHDCircle.org and www.HDCircle.org. You may reach Jonathan at jmonkemeyer

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, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry in Rochester, New York.  He received his MD degree (1971) and postdoctoral training in medicine (1971-73) and neurology (1975-77) at the University of Rochester and in experimental therapeutics at the National Institutes of Health (1973-75).  Dr. Shoulson founded the Parkinson Study Group (www.parkinson-strudy-group.org) in 1985 and the Huntington Study Group (www.huntington-study-group.org) in 1994 -- international academic consortia devoted to research and development of treatments for Parkinson’s disease, Huntington’s dis

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 Huntington's Disease" with Jane Kogan in the house!! To help or get involved, please call the 800-345-HDSA or go online at http://www.hdsa.org/ or you may contact Jane Kogan directly at [email protected]. Thank you for your support!

Thursday, April 21, 2011– Our incredible special guest is Dr. La Puma, a board-certified specialist in internal medicine and professionally trained chef. The leading practicing physician voice for the importance of food in health care, and a New York Times best-selling author twice, he has pioneered food-as-medicine that's tasty and life-changing. Also an award-winning TV host, he has starred in over 100 episodes of "What's Cooking With ChefMD?" and co-hosted Lifetime TV's "Health Corner" with Joan Lunden. He has also appeared on Today, Good Morning America, Oprah.com and NPR and has been published in Guideposts, Shape, the New England Journal of Medicine, JAMA and the New York Times. He developed recipes for Dr. Oz and Roizen's New York Times best-seller You the Owner's Manual.His PBS Special “Eat and Cook Healthy with Dr. John La Puma” premiered in March and will be shown nationwide on PBS in June, so check your local listings. Repeatedly named "One of America's Top Physicians" by the Consumers' Research

Monday, our incredible special guest is the amazing James Valvano whom we all know and love as a true HD warrior. He has invited us into his psyche with his book One With The Blue and brought us out of the proverbial closet with his films, The Faceless Faces of Huntington's Disease and The Faces of Huntington’s Disease: I Am No Longer a Faceless Face, by igniting the HD community all over the world on Facebook and Youtube. James is so passionate and inventive about helping our H’Dears that he has now created James Talk Video, a weekly video blog and James Talk Info Bits which is all about what’s happening NOW in the HD world.  The Faceless Faces of Huntington's Disease:    http://www.youtube.com/watch?v=fMCYQ3IG9Ek The Faces of Huntington's Disease: I Am No Longer a Faceless Face http://www.youtube.com/watch?v=4hRYtTHMfrI James Talk Video 3: http://www.youtube.com/watch?v=kwTJo70awII&feature=related James Talk Info Bits: http://www.youtube.com/watch?v=i7scg5kMxJE James @ THW FL:   htt

Happy 10th Anniversary to everyone at the HDSA Center of Excellence at the UC Davis Medical Center in Sacramento! Terry Tempkin, Co-Director and Nurse Practitioner extraordinaire will be our incredible special guest this week. She is going to share some of their Center’s accomplishments in the last decade and what’s planned for the next 10 years. Thank you for 10 awesome years of service for our HDears!

MAR28__This is the last of four shows in the March 4 HDSA series. Every Monday we have been showcasing another segment of the largest non-profit volunteer organization of its kind for the HD community. Our incredible special guests tonight are Jane Kogan, MSW, and Manager of Programs & Services and Jules Greenwald, Director of Development at HDSA National in New York. We will be focusing on HDSA's expanding advocacy programs, the National Youth Alliance and more detailed information about the critical importance of fundraising. This is the last show in the March 4 HDSA series. I want to thank HDSA for coordinating with HELP 4 HD to make this series possible and for their continued support. Thanks to Fred Taubman, Director of Marketing Development & Communications at HDSA National in New York and to all who participated in the shows. The knowledge gained from these shows is invaluable and since they are recorded, we can visit them often to get personally delivered, detailed information. The time to get

MAR 21__This is the third show in the March 4 HDSA series. Each Monday we will be showcasing another segment of the largest non-profit volunteer organization of its kind for the HD community. Our incredible special guest tonight is Fred Taubman, Director of Marketing Development & Communications and at HDSA National in New York. We will be exploring more of HDSA's remarkable website and talking about HD awareness, peer education and fundraising projects at HDSA with some very exciting news about what is happening with clinical research and clinical trials. Stay tuned for two more amazing shows and let's March 4 HDSA!! To learn more about HDSA and to get involved, visit their website at: (www.hdsa.org) or call (800-345-HDSA).