Help 4 Hd Live!

Tuesday, December 16, we are celebrating all of our amazing JHD/HD advocates who give of their time and energy so willingly and freely to make a difference for their loved ones and for our community members who are suffering from Juvenile Huntington's disease and Huntington's disease. Tonight we will be speaking with four incredible special guests: Stacey Sargent, Roberta Brink, Sharon Thomason, and Vicki Owen. We are so excited to be able to show our appreciation for all that they do AND for all that you all do for bringing awareness and advocacy to JHD and HD. Tune in for an incrediblly special program.

Tuesday, December 9, 2014 3:30 pm PST/6:30 pm EST With suprise guest HD researcher Dr. Leslie Thompson from the University of California at Irvine and Super HD Advocate Warrior, Frances Saldana, will be here to give us an update on HD research at UCI and the 10th annual WSCS (World Stem Cell Summit) that just happened in San Antonio, TX, December 3-5, 2014. Every year GPI (Genetics Policy Institute) has their summit which brings the best of the best of regenerative medicine, science and research from around the world together to meet and exchange information.  This year, the HD Advocate organizations: Help 4 HD International, Joseph P. Roberson Foundation and UCI HD Care were honored with the Inspiration Award: HD Advocacy Community. Help 4 HD VP, Katie Jackson, UCI HD Care President, Frances Saldana and Joseph P Roberson Foundation President, Judy Roberson accepted the awards. Tune in for some amazing information.

Tuesday, December 2, 2014 - 3:30 pm PST/6:30 pm EST Tonight we will be discussing Dr. Goodman's latest article "2014: A Yin-Yang year for HD". She writes: "Particularly during this past year, living with Huntington's disease (HD) has been full of its ups and downs. First there was the hope in ongoing clinical trials of both coenzyme-Q-10 and creatine. Then there was sadness and fear that came with their failures.  And now hope is springing again for new drugs coming to clinical trials now that will take a few years to complete.  No doubt this Yin-Yang cycle will continue for HD, just as it does for other diseases." "However, there may be reason to believe in the chance of greater success this next time around." Read her article: www.HDDrugworks.org Tune in at 3:30 pm PST/6:30 pm EST

This show was pre-recorded. We wish to play this show today as Help 4 HD Director of International Affairs, Daniel Medina is in Mexico City right now visiting Margaret and her center.  Margaret D’Aiuto Martarano de Gallardo was born in California she become a nurse, meet and married her husband Dr. Luis Gallardo Ayala, and moved to Mexico. She has seven children and at the age of 61, her husband is given the news that he might have HD and he passed away in 1992. We are priviledged to interview this amazing woman of 90 years young about her trials and triumps over Huntington's disease and her life of love and commitment to help those who are suffering from Huntington's Diease. She is the Director of Asociación Mexicana de la Enfermedad de Huntington IAP in Mexico http://www.huntingtonmexico.org Hear her story on Help 4 HD Radio!

Tuesday, November 18, 2014 – 3:30 pm PST/6:30 pm EST Our incredible special guest is Dr. Andrew McGarry from Cooper University NJ, who is Co-PI for the PRIDE-HD study in the USA, which is sponsored by Teva Branded Pharmaceutical Products R&D and coordinated by HSG (Huntington Study Group). We will be talking about the ongoing global research study, which is a Phase II clinical research study of an investigational drug called pridopidine in individuals who have a diagnosis of Huntington disease (HD); and how the results of this trial may help to guide the future treatment of Huntington disease. The purpose of this randomized double blind study is to see what effect the investigational drug, pridopidine, has on movement, thinking, and behavior, compared to placebo, in people with Huntington disease after 26 weeks of receiving either pridopidine or placebo. In addition, information will be collected about safety and tolerability of pridopidine in people with HD. Dr. McGarry works in the development and im

Help 4 HD News Channel has been in contact with Louise Vetter CEO and has offered HDSA a forum to give our community an update on its progress on programs, research initiatives, Centers of Excellence, Diplomat Program and more.   We will be discussing the following information: I.             HDSA Overall Implementation of Strategic Plan guides everything we do with clear goals and practices to support our missionThe result: new advocacy, education and research programs to support HD families II.           Research HD Human Biology ProjectHDSA Research WebinarsDon King Fellowships III.          Education & Community Support National Social Worker to staff HelplinePartnership with HDYOResources regarding Caregiving, Longterm Care and Genetic testingNew HDSA Center of Excellence grant program IV.          Advocacy HD Parity ActSocial Security AdministrationUS Food & Drug Administration V.           Importance of Community Engagement More HDSA Chapters & AffiliatesMore Team Hope WalksMore visibili

TUESDAY, NOVEMBER 4, 2014 Dr. Goodman writes, “Bummed" was what this author felt after the recent announcement of (HD).  We can put some positive spins on recent trial failures; we have learned how to run large clinical trials, we can learn from negative outcomes, and best of all hundreds of HD individuals are freed up to participate in other (potentially better) trials.  But the reality is that this is one more disappointing failure in an increasingly long string of negative trials. The community is bummed.  Saying it straight is better, helps us to get over it, get up and go on to what comes next.… We will be talking about the recent closure of the HSG clinical trial CREST-E. Send your questions and comments to [email protected] 

PRE-RECORDED - TUESDAY, JUNE 17, 2014 Our incredible special guest is Claudia Testa, MD, PhD, Associate Professor of Neurology, and Associate Director of Clinical Research and medical director of the new VCU Parkinson's and Movement Disorders Center. The Center aims to integrate research, clinical care, and education and outreach missions in an interdisciplinary collaborative approach to making a difference in movement disorders. Dr. Testa moved to VCU in 2011, where she is excited to lead a new Huntington disease program. We will be discuss her career of care and research. Read more... After completing her MD and PhD degrees, Dr. Testa returned to Boston for internship at Beth Israel Hospital, then neurology residency in the Partners program at Massachusetts General Hospital and Brigham and Women's Hospital, where she was a chief resident her final year. She moved to Emory University for a movement disorders fellowship and basic research with Dr. Timothy Greenamyre. The HDSA Center of Excellence for Hunti

PRE-RECORDED TUESDAY, MARCH 29, 2014 3:30 PM PST Our incredible special guests today are: Joan F. Schanck, MPA William Hinman, CFRE, MBA Kelly Milukas, RMF Commissioned Artist  Katie Jackson, VP, Help 4 HD International SUBJECT Tonight we have four amazing and incredible guests here to talk about Regenerative Medicine Foundations upcoming Conference and Gallery Opening event which will be held at the Claremont Hotel in Berkeley, CA (May 5-7). We have Joan Schank, MPA, Academic Research Program office at Wake Forest Institute for Regenerative Medicine and Director of Education for the Regenerative Medicine Foundation. We have Bill Hinman, CFRE, MBA and Executive Director of the National Regenerative Medicine Foundation. Its mission is to encourage and promote unbiased efforts which accelerate the discovery and development of new regenerative medicine therapies for patients. Then we have Kelly Milukas, from Tiverton, RI, an amazing and talented award winning, multimedia, modern fine artist. She has been

  TUESDAY, OCTOBER 14, 2014 We are very pleased to have Dr.’s Daniel Van Kammen and Speid with us tonight. Lorna Speid, PhD, is a pharmacist. She works in the pharmaceutical industry as a regulatory affairs and drug development consultant. She will be interviewing Dr. Daniel Van Kammen, a researcher in the area of Huntingdon’s Disease research. We heard from Lorna a few weeks ago when she discussed the clinical trial process, and informed consent in particular. Today, she will be interviewing Dr. Dan Van Kammen, thereby allowing us to get some insights into the field of Huntingdon’s Disease Research and where it is going.

  Tonight our topic for discussion is “Gastrointestinal Problems in Huntington's disease” Also read Dr. Goodman’s article http://hddrugworks.org/index.php?option=com_content&task=view&id=341&Itemid=30 Dr. Goodman writes, “Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington's disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if mouse models of HD are predictive, we can expect problems there too.  But the biggest contributor to gut distress in HD is likely due to medication side effects, less intake of water and more sedentary lifestyle as the disease progresses…” Please send in your questions and concerns to [email protected]

Tonight our incredible special guest is none other than the famous and super powerful Kristen Powers, creator of “Twitch” the documentary about her journey with Huntington’s disease, the possibility that she has inherited the same fate as her mother and the struggle about whether or not to test. Kristen is junior at Stanford University, created her first documentary, Twitch, following her genetic testing for Huntington’s disease (HD). Kristen hopes that this film will spark international conversations about genetic testing, the implications of making the choice to test, as well as remove the stigma surrounding neurological diseases. She raised over $45,000 using crowd-funding platforms to fund the creation of this film, and is currently circuiting the film on a global tour. She has appeared in major news outlets like USA Today and previously spoke at TEDxTeen. http://twitchdocumentary.com/ https://www.youtube.com/watch?v=ZdGKfmf-How#t=142 https://www.youtube.com/watch?v=l6JiBiMqiI4 http://twitchdocumenta

Tonight we welcome back to the show, Dr. Lorna Speid who works in the pharmaceutical industry as a regulatory affairs and drug development consultant. We will be talking about the role of the PI (Principal Investigator) in clinical trials. After working in the pharmaceutical industry for many years, Dr. Speid saw a need to provide information to patients about clinical trials that would allow them to be empowered enough to ask the right questions before and after entering clinical trials. She wrote the book Clinical Trials: What Patients and Healthy Volunteers Need to Know, to accomplish this.  It was published by Oxford University Press in 2010.  Oxford University, the publisher of the book has agreed to provide Help 4 HD with a donation every time anyone using the Code HELP4HD154 in purchasing a copy of the book. The link for purchasing the book is http://global.oup.com/academic/promo/32990/?cc=gb&lang=en PROMO CODE: 32990. This is a book that will provide information on the development of new treatme

Pre-Recorded I am extremely honored and excited to introduce our incredible special guest/s tonight Dr. Vicki Wheelock/and Teresa Tempkin RNC, MSN, ANP… Dr. Vicki Wheelock, UC Davis Department of Neurology: Clinical Professor, Director Neurology Residency Program, Director Huntington’s Disease Clinic, Site Investigator, Huntington Study Group and Co-director, Northern California Kaiser Pallidotomy Program. Vicki Wheelock is a neurologist with special interests in pallidotomy (neurosurgical procedure), Parkinson’s disease and Huntington’s disease. Tonight we are going to be talking about PRE-CELL an observational study being conducted at UC Davis Neurology in Sacramento, CA.

PRE RECORDED ON 3-5-12 Ask Dr. Goodman is back... tonight we ar going to talk about why a healthy life style is important in HD.  A big part of the answer include factors that promote the process of neuroplasticity. The "plasticity" part of neuroplasticity refers to capacity to change, similar to how plastic is malleable and can be made into many shapes.  Similarly, neuroplasticity describes the ability of nerve cells to change -- based on various forces -- by making new, or stronger connections to other nerve cells in the brain.  Healthy life style factors promote these forces.  And vitally important in brain diseases, healthy life style factors can help preserve brain function while damage occurs." Also read Dr. Goodman's article: "Healthy Life Style: Healthier Body and Brain" Link: http://hddrugworks.org/index.php?option=com_content&task=view&id=309&Itemid=30

Today, our incredible special guest is Carla Muller, Eldercare Advisor at A Place For Mom, connecting families to senior care and dementia care. A Place For Mom is the Nation's largest senior care information service. Learn about assisted living facilities, nursing homes, residential care homes and facilities that care for folks who suffer with dementia. With resources about home care, Alzheimer's care or information about how to decide between keeping someone home, or finding the right placement, A Place For Mom has a great wealth of information with wonderful advisors to help you through the most difficult decisions. It's always good to know what your options are before you need them. Visit http://www.aplaceformom.com/ for more information about this wonderful free service. We have known Carla for many years and she first appeared on Help 4 HD Radio in 2012.

TUESDAY, AUG 19, 3:30 PM PST/6:30 PM EST - Call in: 310-982-4227 or toll free: 877-497-4103 Tonight our incredible special guest is the intelligent and beautiful Mona Gable, a freelance writer in Los Angeles and the author of “Blood Brother: The Gene That Rocked My Family.” The book is available on SheBooks.net. It’s a short read, but it’s very power packed with accounts of her personal journey with Huntington’s disease and important facts about the disease. It’s a must-must read! Mona has also written an article titled: “Speaking out about living in silence with an incurable disease” posted on August 3 by the Sacramento Bee and recently posted on The Huntington’s Post: http://www.thehuntingtonspost.org/MonaGable1 Mona Bable an accomplished and published author of "Blood Brother" will be with us to talk about her journey with family members and Huntington's disease. Find "Blood Brother" on SheBooks.net: https://bookstore.shebooks.net/product/blood-brother/#.U_N0WUhGwXw  

TUESDAY, AUG 5, 2014 - 3:30 PM PST/6:30 PM EST Swallowing difficulty and Huntington's disease Posted August 3, 2014, by LaVonne Goodman, M.D. Dysphagia, or difficulty swallowing, is a big problem in Huntington's disease (HD), but surprisingly little is known about it.  It is not known how early it begins, or how symptoms and swallowing dysfunction progress over the stages of HD.  Further, even less is known about techniques that might prevent, alleviate or treat it.  As such, we welcome the recent attention given this symptom by investigators from Europe. READ THE ARTICLE -- LISTEN TO THE SHOW...

We are very pleased to have Dr. Speid with us tonight. Lorna Speid, PhD, is a pharmacist. She works in the pharmaceutical industry as a regulatory affairs and drug development consultant. She has a practice in the development of new treatments for rare diseases. After working for Sanofi Winthrop in the United Kingdom, Ciba Geigy at headquarters in Switzerland, and Novartis in Switzerland, she moved to the United States. She worked for three small companies in the United States, and now runs her own consulting practice. Dr. Speid sat on an important NIH Committee for the development of new treatments for rare diseases. She is the founder of a non-profit called Rare Diseases Patients First!  This organization is planning to provide education to patients around the world that have a rare disease, about the clinical trial process. This will be done free of charge.  We will provide more information about these educational internet-based meetings, as soon as they are ready to be rolled out later this year. Dr. Spe

Tonight we will talk about preimplantation genetic diagnosis or (PGD) for Huntington’s disease with Dr. Goodman. Read her article on www.HDDrugworks.org titled: PGD for the Prevention of HD. http://hddrugworks.org/index.php?option=com_content&task=view&id=336&Itemid=30         She writes… “For more than a decade, couples at risk for Huntington's disease have had the option to conceive an unaffected child by utilizing the reproductive process of preimplantation genetic diagnosis (PGD).  If PGD became common practice in HD, it could eliminate the majority of disease for the next generation.  So if PGD has the potential to mostly "wipe out" HD for the next generation, why is it so rarely utilized?” We will discuss the pros and cons of this novel approach to eliminating HD for every in the generations to come. Tune in to a very interesting and informative program with Dr. LaVonne Goodman.