Help 4 HD Live!

Heather Hare, Director of Communications and Outreach with the Huntington Study Group is joining us to discuss the mission of HSG and their important contributions to the HD/JHD community, including their Annual Event that will take place in Denver, Colorado on November 2nd-4th, 2017. Please join us to learn about HSG. 

CEO/Founder of WeHaveAFace, James Valvano, talks about their newest project "The Purple Road"

Join our host, Katie Jackson as she interviews James Valvano, founder and President of WeHaveAFace.org about the filming of their documentary "The Purple Road". The documentary is about families living with Juvenile Huntington's Disease. James has traveled the United States and other countries to capture the footage for the film bringing awareness to a portion of the Huntington's community that is...

Join us on Help 4 HD Live! as Roshni Bhatt discusses her continued research in India and her background with Huntington's Disease. Roshni has been on the show before and will share the progress that has been made with her research. 

Lauren Holder is on the show today to talk about herself as an advocate. Lauren is well know in the HD community and has frequented our talk show since the very beginning. Today we will be talking about her recent trip to Washington D.C. and all that was going on while she was there fighting for the HD Parity Act. Lauren is a caregiver and is such an inspiration to so many of us in the same positi...

Caring for a child with Juvenile Huntington's Disease has a unique set of challenges. From dealing with school officials, IEPs, doctors that aren't familiar with their child's symptoms. Chloe and Misty are going to join our host, Katie Jackson and discuss the daily trials and tribulations of their lives. 

Gary Barg, founder and CEO to Today's Caregiver, caregiver.com, and Fearless Caregiver, began his journey in 1995, after returning home to help his mother care for his elderly grandparents. Overwhelmed by everything this entailed--finding a care home, dealing with insurance, etc.--he decided there needed to be one single source of information, advice, and support for caregivers. Gary founded the m...

After clinical trial results were announced for deutetrabenazine (Austedo), I hoped we might be getting a drug that didn't cause the side effects of other chorea treatments (antipsychotics or the old tetrabenazine). And now that I have prescribed it, it has proved better than I had expected based on the clinical trial results.  Though not successful in everyone, it has clearly decreased chorea in...

Cindy Moore is Erin's mom. Cindy has walked every step, alongside her daughter and the struggles that go along with Juvenile Huntington's Disease. Cindy lives in Canada and is also the President of We Have A Face - Canada. This past weekend Cindy and her team raised over $4,000 that will all be donated to UC Davis to help fund their JHD research! Tune-in Wednesday August 30, 2017 at 1PM PST to hea...

This year Help 4 HD International exhibited at the Alabama Association of Chiefs of Police Summer Conference. Join us to hear about Vicki Owens experience coming face to face with law enforcement agents from the state of Alabama and teaching them about Huntington's disease. 

Phil’s Kids was set up in memory of Dr Phil, who sadly passed away from Huntington’s Disease (HD) in 2014. Whenever Dr Phil lost a patient he would immediately go and look at the new-born babies. He did this, he said, because it reminded him of the circle of life, of life continuing, of new hope and who knew what amazing feats these new humans might achieve. It was because of his belief in future...

Neer Ziskind is the CEO and co-founder, along with geneticist Dr. Yael Wilnai, of GeneFo. GeneFo was created as a solution to patients and medical experts wishing to connect and enrich their understanding of their condition, how to better manage it, and get the most up-to-date information on new treatments and clinical trials. Neer will share with us how GeneFo works and why you should set up a Ge...

Brian Schrag is a Dallas-based composer, performer, sit-down comic, and community arts therapist. He and his family lived in central Africa for about 7 years, helping communities translate the Bible into their languages and use their own arts to make their lives better. Brian has a PhD in ethnomusicology from UCLA, a CAG repeat of 41, one wife, and three mostly grown children (and my first grandch...

Lanise Shortell, RN, is a Pediatric Clinical Care Nurse Specialist who received her degree from Georgia State University. She has worked with The Children’s Program of Hospice Atlanta, Visiting Nurse Hospice Atlanta, since 2007. Ms. Shortell was nominated for the Atlanta Journal Constitution Celebrating Nurses Award in 2008, 2009, and 2014.  According to colleague Jan Roesner, “Lanise's passion in...

Shelby Lentz, Miss Greater Kalamazoo, is on our show to talk about how she became aware of Huntington's disease running in her family. Shelby is a Huntington's Disease advocate and due to her own experience with this disease she is able to shed light on common questions, thoughts and decisions that she has faced. We will be discussing her family history, her own testing process and her ability to...

Neer Ziskind is the CEO and co-founder, along with geneticist Dr. Yael Wilnai, of GeneFo. GeneFo was created as a solution to patients and medical experts wishing to connect and enrich their understanding of their condition, how to better manage it, and get the most up-to-date information on new treatments and clinical trials. Neer will share with us how GeneFo works and why you should set up a Ge...

Azevan Pharmaceuticals is a clinical stage, small molecule drug development company developing novel therapeutics to treat disorders of stress, mood, and behavior. The Company’s first clinical compounds selectively block the effects of arginine vasopressin, a peptide neurohormone involved in the pathophysiology of Intermittent Explosive Disorder, neuropsychiatric symptoms in neurodegenerative dise...

Therese Marin will be joining us on Help 4 HD Live to give us a update on her book "Watching Their Dance."

Mary Robertson Knows exactly what it's like to care for someone with Huntington's disease. Mary is a caregiver extraordinaire and offers support, resources and a listening ear to hundreds. Mary sits on the Board of Directors at WeHaveAFace as the Director of Patient Advocacy. Mary often reaches out to people who have no association to HD and teaches them about this disease. Mary also has come into...

Ginnievive Patch is the pseudonym used by the author of Help 4 HD's new book, I Fight for Understanding. Ginnievive is both a nurse and a caregiver extraordinaire who has many insightful tips for caregivers. She is a caregiver to her ex-husband, her mother-in-law, and two of her sons, all of whom have Huntington's disease. Her passion is to educate caregivers and help them survive the turmoil HD/J...

"ChronicallySmiling.com is a part of Chronic Connect Inc.  Chronic Connect Incorporated seeks to serve the chronic illness community by providing resources and community for patients. We will be developing technology that allows patients to find local support, sending care packages to both patients and caregivers in need and creating programs for patient and caregiver support and education. We lau...

Stacey and her husband, Terry Sargent, are incredible JHD warrior parents who live outside of Atlanta, Georgia. Terry adopted Stacey's son, Cory, and served, in every sense, as Cory's father, loving him as his own child.  When Cory started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, Stacey and Terry noticed a facial droop and drastic declin...

Tune in to hear an interview with Deborah Bunting, who is the caregiver for her adult son, Jimmy, who lives with Huntington’s disease. Deborah and Jimmy made a bucket list for Jimmy, and Deborah is fighting to make sure all her son's dreams come true. Recently, Jimmy, with the help of local law enforcement, firefighters, and community members, made it to the top of a lighthouse. Jimmy loves lighth...

  Tune in to Help4HD LIVE! On Thursday, April 27th, 2017 to hear from Kisa Heyer, Chief Executive Officer of Dream Foundation. Kisa Heyer directs the operations of Dream Foundation, the only national dream-granting organization for terminally-ill adults, including programming, development and staff functions, and management of the Board of Directors. Since her appointment as Executive Director in...

Terry Tempkin is an ARNP who worked with Huntington's families for 19 years at the UC Davis HD Canter, helping patients and families through their HD/JHD journey. Terry has retired from UC Davis, but she hasn't retired from HD! She works tirelessly as a volunteer to help educate people about the disease. She is a medical advisor for Help 4 HD International and also sits on the Executive Board of D...