Help 4 Hd Live!

MAR 14__This is the second show in the March 4 HDSA series. We will be showcasing the largest non-profit volunteer organization of its kind for the HD community. Our incredible special guest this tonight is Debra Lovecky, Director of Programs and Services at HDSA National in New York. We will be talking about some new features on the website: www.hdsa.org and other programs for education, events and a very helpful webinar called "Caregiver's Corner". There is an interactive Forum on the website that was launched last year as well and we will be talking about HDSA National Convention. Please join us today and each Monday this month for some very exciting new information about what’s happening at HDSA!! To learn more about HDSA and to get involved, visit their website at: (www.hdsa.org) or call (800-345-HDSA).

MAR 7__This is the first 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 our HD community. Our incredible special guests are Louise Vetter, CEO and Nancy Rhodes, Director of Field Development & Operations at HDSA National in New York. The idea is to explore every aspect of HDSA’s programs and services. HDSA was founded in 1968 by Marjorie Guthrie, wife of folk music legend Woody Guthrie who lost his battle with Huntington's Disease at age 55. Its network of resources and referrals are unmatched by any other HD organization. HDSA Centers of Excellence provide medical and social services to those affected by Huntington’s Disease and their families, while a toll free helpline and extensive national website help to provide access to information and services. HDSA chapters, affiliates, regions, social workers, and support groups work in tandem with the Centers of Excellence to increase awareness about Huntington

Special guest Mike Ratel is Producer/Director of "On Your Mark, Get Set Mow", a movie about mower racing and raising mow money for Huntington's Disease awareness and research in MI. This is going to be a great show... so mark, and set your calendars for this one.

James Valvano has postponed his trip to Egypt for now. The exciting news is that his new film "The Faceless Faces of Huntington's Disease" is currently taking first place in the Neuro Film Festival contest. Go to this link http://www.youtube.com/watch?v=fMCYQ3IG9Ek, watch and vote. Everyone needs to see on this new, edgy, poignant film about HD. It's a black and white, visually and emotionally stimulating film which illustrates the physical, emotional and mental aspects of HD with a twist. The message in the end is positive and exhilarating. Through this film, James empowers himself and other HDears to take off the mask (stigma) and no longer be a faceless face of HD. The world has taken notice. Awesome work James!!

In loving memory of Peter Dickinson AKA “Pops” who has passed on to the Himalayas in Heaven. Join us for a fantastic show with Jonathan Dickinson who is wrapping up this courageous documentary/feature film Called “Father Spirit” about he and his dad (Pops) who has Huntington's Disease. They are traveling by motorcycle through India and the Himalayas to capture their last father-son adventure together on film. This is a beautiful and uplifting illustration of the immense love between the two; the son (Jonathan) now taking the roll of father to his Pops as they travel through this richly beautiful yet sometimes stark land. For teaser clips of his film go to http://www.youtube.com/watch?v=dUuY_X8-kQk&feature=related

This is going to be a very exciting show with Audrey Watson. She is a marathon ultra-runner for Huntington's Disease awareness and fundraising. Whether she is running the Himalayan 100 Stage Race in October 2010, the Avalon 50 Mile Run at Catalina, the Bulldog 50K Ultra Run at Malibu Creek or the PCT 50 Mile Trail Run, Audrey is always anticipating her next step. She is an unstoppable HD advocate and she is going to tell us what her next plans are with a sponsor, the San Diego 100 Mile, a new blog and how this all ties in with her desire to support our HD community. It is through her contagious enthusiasm and dedication to run for HD that OUR energy is renewed to keep fighting the HD fight. Thank you Audrey, our hearts are with you on each and every run! Her websites are: http://www.firstgiving.com/audreywatson http://himalayan100milesstagerace.blogspot.com/ http://adventuresofultrarunning.blogspot.com/ http://bulldog50kultrarun.blogspot.com/ http://pct50miletrailrul.blogspot.com/

Our special guest tonight is Daniel Brennan who joined Lundbeck in July 2009, after Xenazine had been developed and launched in the USA. He is Vice President and General Manager of Neurology Franchise at Lundbeck and now leads the group of people that distribute, provide information, and support Xenazine as well as other nervous system therapies for rare diseases. He enjoys meeting people in the HD community to better understand the impact that this disease has on people and their families, as well as learn what they can do better as a company as they continue to make the medicine available to the public. Lundbeck has become very involved and dedicated to Huntington's Disease and recently announced their commitment to research for HD that may halt or slow the progression of the disease. He’d like to make sure that he understands your concerns and also try to provide information that may be helpful in your understanding of Lunbeck’s actions and activities.

Our special guest tonight is Dr. LaVonne Goodman, a “mostly retired” internist and patient advocate who decided to help a Seattle clinic recruit patients with Huntington’s Disease (HD) and was wildly successfully at it. Her secret, she says, is having a personal relationship with many, many patients. Her husband died of HD at age 36. Since then she has seen HD patients and led support groups, building relationships as a friend to families dealing with HD. She has kept a close watch on the clinical studies field, but all studies were observational in nature and not designed to alter the course of their disease or symptoms. Then in 2010, she heard that the first compound designed for motor improvement in HD patients was entering phase II trials. After realizing the Seattle area was not involved, she pressed the Huntington’s Study Group who connected her with a Colorado physician who had just joined Evergreen Neuroscience Institute in Seattle. The two decided to work together on the trial with Goodman handling r

Our special guests tonight are Kimberly Gibson (repeat performance) and James Valvano. We will be talking about the Faith & Hope Society again, a new addition blog to their website called “James Talk” written by James Valvano and what they are adding to their website repertoire to make it more interesting and interactive. It was such a pleasure having Kimberly on the show December 27 that we just had to have her back again....James is a published author, see: “One With the Blue”, a fictional, but with some actual experiences written-in story which depicts the trials and tribulations he experiences before the disease (Huntington's Disease) takes his life. James takes you on a delicate and intimate journey, one expressing the physical, emotional, and psychological challenges an individual with HD experiences. See this link and order your copy: http://www.publishamerica.net/product95982.html. Please join us for this fascinating collaborative show.

Our special guest tonight is the amazing Lisa Kjer. She is a Master of Social Work for the UC Davis HDSA Center of Excellence in Sacramento, CA and works with 200+ families who come to see the center's dedicated neurologist. Lisa was hooked on social work at a very young age and has devoted her life to the helping professions. In 2001, HDSA named UC Davis a center of excellence, recognizing its expertise in clinical care for Huntington's disease patients. Directed by associate physician Vicki Wheelock and nurse practitioner Teresa Tempkin, the multidisciplinary team also consists of full-time social worker (Lisa Kjer), psychiatrist, physical therapist and genetics counselor. The clinic offers predictive testing, diagnosis and management of symptomatic Huntington's disease, nursing home outreach and community outreach. Patients and families can also participate in clinical trials sponsored by the Huntington Study Group. We will be asking Lisa some very pertinent questions about what to do if we suspect we are

Our incredible special guest tonight is Gina McGahen Becker who is doing great work to bring awareness to her community about HD. When I asked her to tell me something about herself, she immediately started telling me about how much she loves her friend and what an honor it is to be advocating for her. Here is a letter she sent to me explaining why she is doing what she is for her friend...“My name is Gina McGahen Becker and it is my goal to bring the community’s attention to Huntington’s Disease. My friend since childhood, Angie Sellars Elkins, was diagnosed with this genetic disease in February of 2004. What makes this even more tragic is she was diagnosed after her sister, Anita Sellars Jackson, who is seven years her junior. Angie and I have exchanged birthday cards without fail for longer than I can remember. This year, when my birthday came around, there was no card. I had that feeling you get in your gut when you know something isn’t as it should be and you don’t want to deal with it. Then two weeks la

Monday night our special guest is KIMBERLY GIBSON. She is gene positive for Huntington's Disease and grew up surrounded by HD. Like so many HD families, she has helplessly watched as the people she loved died in front of her. As the caregiver to her grandfather at age four and her mother's caregiver by the time she was 22, she had almost no support and nowhere to turn.... That's why Kimberly founded the Faith & Hope Society, a non-profit organization with a few visions in mind, but mostly because, in the words of her aunt who is in the late stages, "No one should live through HD alone". She is proud to have the Faith & Hope Society and to be sharing her journey with you....The organization was formed exclusively for charitable and educational purposes. Their goal is to educate the public, raise awareness about Huntington's Disease, facilitate charitable events and to support present and future activities of geographically distant non-profits that share the same vision. FHS is funded by way of contribu

This show is going to blow you away!.... Our special guest is the esteemed JAN A. NOLTA Ph.D., Director Professor, UC Davis Stem Cell Program and Institute for Regenerative Cures…. She and other amazing scientists have been working day and night to bring us the first HD Stem Cell Clinical Trial…. This is History in the making for the potential CURE of Huntington's Disease!!... DR. NOLTA joined UC Davis in 2006 after serving for five years as scientific director of the cell processing and gene therapy Good Manufacturing Practice (GMP) facility at Washington University School of Medicine in St. Louis…. Her laboratory uses human stem and progenitor populations to examine their recruitment to areas of tissue damage in immune deficient mice…. Her research is focused on developing improved stem cell therapies for treating neurodegenerative diseases including Huntington’s and Parkinson’s diseases and ALS, Liver disease, lysosomal storage diseases, and peripheral vascular disease…. Her group focuses on “bench to the

Our special guest this show is the amazing and dynamic CHRIS FURBEE. Chris was born April 30, 1966 and tested positive (43 repeats) for the Huntington's Gene in 1996. He recently came to terms that he is in the early stages of Huntington's Disease. He has been working on a documentary about his mom and life with Huntington's Disease. The story follows him from his decision to go back home to West Virginia to visit his mom for 2 months to see if she could continue living on her own or if he needed to place her into a nursing home.... The following year he went to get the genetic test and found that he did inherit the gene from his mom. The story does not end there as he has chosen to empower himself by speaking to medical students at UCSF and Stanford. He decided that he had to live a positive life and educate as many people about HD.... Chris has an annual festival event called Furb on the Green where he gets to play in his band, Ik Nak Fu and showcase many other talents. The proceeds are used to fund his doc

Dr. Robert Pacifici, Chief Scientific Officer from CHDI Foundation will be our special guest on the show. Dr. Pacifici will talk to us about who is CHDI, what their goals are as a foundation, the future outlook in HD research and how HD families can help them achieve their goals.

SPECIAL GUEST: Mike Brown.... Mike and Allie are very special friends of ours. Mike started the first Huntington's Disease support group on the California Central Coast in 2007. He will talk to us about the clinical trial his wife Allie has participated in. The Horizon clinical trial of Dimebon is a global collaborative multi-center, randomized, double-blind, placebo-controlled study in individuals with mid-to-moderate Huntington's disease. That's a mouth-full. Mike will explain how this clinical trial came about and what stage they are in. Interesting stuff!!

SPECIAL GUEST: Matty Ellison from the UK….SUBJECT: Matty is working hard on a new project called the Huntington’s Disease Youth Organization (HDYO). HDYO will support young people from the HD community all over the world….Launching in late 2011, HDYO will be the first organization to specifically support young people from the HD community. The HDYO website will provide support, educational information and videos about HD, stories of young people’s experiences with HD and support forums will all be provided. It will also be available in a variety of languages, providing a place for young people from all over the world to connect and receive much needed support…..Why do young people from an HD family need support? HD is a devastating neurological disorder. The affects of HD on a family are enormous. Young people in particular face a tough time often having to watch a parent slowly deteriorate over many years. Many young people from the HD community provide care for their parent. Most will have lost other family

SPECIAL GUEST: Lauren Holder.... SUBJECT 1: H.R. 678 (The HD Parity Act).... LAUREN is our incredible special guest on HELP 4 HD. She is an HD activist with the "PASSION FACTOR" and she is on a mission to educate our government about how critically important H.R. 678 is to all of our HD families.... * H.R. 678 is a Bill before Congress to require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease.... With so many challenges facing us in finding Social Services, we need more extraordinary people like Lauren to join our cause. Go Lauren!.... SUBJECT 2: HDSA/NYA.... LAUREN is also a volunteer for the Huntington’s Disease Society of America and the National Youth Alliance. She has organized several events to raise awareness and money to benefit our youth who are affected by HD. Lauren, you are a dynamo! We can a