Help 4 Hd Live!

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 often forgotten. JHD holds a special place in the hearts of those of us at Help 4 HD, International and we are looking forward to hearing about the experiences James had during his travels. 

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 position. It is advocates like Lauren that will make a difference for the next generations to come. Tune-in!

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 magazine Today's Caregiver and the online site caregiver.com to be that source. He also began hosting Fearless Caregiver conferences around the country and introduced a free online newsletter for caregivers. Today, Gary will share with us the many resources that Today's Caregiver and caregiver.com have to offer, as well as how to access those resources. The photos in this show's carousel, taken from the caregiver.com website, will give you a glimpse of the resources that are available.

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 most. But what I was not expecting is how much this drug improves the functional activities that chorea impacted. (Part of Dr. Goodman's Article on Austedo on HD Drugworks) To read the whole article please go to: http://hddrugworks.org/

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 hear more about Cindy, Erin and We Have A Face!

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 generations, the possibilities of medical science and his great love of children that we decided to start Phil’s Kids. Stopping the passing of the gene is the only way to reduce the numbers of those with HD. Phil’s Kids aims to assist people to do just that. By offering financial support, information, advice and peer support for PGD-IVF we hope to be able to help the HD community to stop this horrendous disease in its tracks. The charity wants this generation within a family to be the last generation in that family to have HD, ever. 

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 GeneFo account. Registration is FREE, and once you set up an account, you will have access to all the resources featured on the website. The mobile app, available on iTures, is described thus: "Simply choose your condition, and start comparing your symptoms or medication to other patients like you, and see if they have more efficient treatments and drugs! You will also get complete and free access to: A physician's directory (doctors, researchers, hospitals) that patients are rating, so you know who are the best practitioners in your areaMedical advice: No more scrolling through PubMed or WebMd- Simply ask your question

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 grandchild due in October!).   To learn more about Brian Schrag please visit www.hdblues.org and www.makelifehd.org. You can also vist a tribute page Brian created at: http://www.brianatplay.com/marilynschrag.html where you will find a tribute video to his mother with HD Blues playing in the background. 

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 life is caring for terminally ill children and their families." She is part of a very small group of nurses in Georgia certified to provide care for this population. Lanise is extremely dedicated and competent in her skill set. To say she gives 100 percent of herself to children and families is an understatement. Her ability to positively intervene is truly miraculous. Ms. Shortell is a Certified Grief Recovery Specialist, HPNA Certified in Pediatric Hospice and Palliative Care, and HPNA Certified in Perinatal Loss Care.  

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 bring much needed awareness to HD all while being a singer/song writer, working, competing and community outreach AND attending college out of state. Here is a link to her YouTube page with her newest music video:  https://www.youtube.com/watch?v=VXhqdu21q-Q You can find her on facebook at: https://www.facebook.com/shelby.o.lentz also a link to her page, Miss Greater Kalamazoo Scholorship Program: https://www.facebook.com/MissGreaterKalamazooScholarshipProgram/?pnref=lhc 

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 GeneFo account. Registration is FREE, and once you set up an account, you will have access to all the resources featured on the website. The mobile app, available on iTures, is described thus: "Simply choose your condition, and start comparing your symptoms or medication to other patients like you, and see if they have more efficient treatments and drugs! You will also get complete and free access to: A physician's directory (doctors, researchers, hospitals) that patients are rating, so you know who are the best practitioners in your areaMedical advice: No more scrolling through PubMed or WebMd- Simply ask your question

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 diseases, PTSD, and other affective disorders. Vasopressin 1a receptor antagonists represent a novel mechanism of action for addressing these indications. The Company completed a Phase II clinical trial with its lead compound, SRX246, for the treatment of Intermittent Explosive Disorder in adults. The primary endpoint and exploratory goals of the trial were achieved. Two additional Phase II clinical trials launched for the treatment of irritability in Huntington’s Disease Patients and for the treatment of PTSD.

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 situations that were unplanned where she was able to speak with someone who has Huntington's Disease and was able to offer resources. Join-in to hear Mary's story! http://www.wehaveaface.org

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/JHD can cause in the early stages, primarily if the psychiatric symptoms outweigh the physical symptoms. She and her ex-husband remain close, making memories. Her motto is, "If I can help one family avoid being shredded apart, then I have accomplished my goal." HD/JHD is a wild roller coaster, and her goal is to make the ride smoother for others. I Fight for Understanding is available for purchase from the CreateSpace eStore (https://www.createspace.com/7113258) and on Amazon and Kindle. All net proceeds from the book go to Help 4 HD International's Family Relief Fund.

"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 launched in April of 2017 and are currently applying for our 501(c)(3) license." Ilana Jacqueline | Executive Director: "I’m Ilana. I’m a rare and chronic disease patient and patient advocate from Boca Raton, FL. Taking care of my disease has been a struggle over the past few years, and Chronically Smiling is my way of saying thank you to the community who helped support me through some of my roughest flares, educated me on how to be a better patient, and helped me to know that there is life after a difficult diagnosis." Ilana shares with us who qualifies for assistance from Chronically Smiling, what kind of assistan