Podcast appearances and mentions of james valvano

Kevin's journey with WeHaveAFace began over a decade ago when he joined as a regional advocate. Recognizing the urgent need for advocacy in the HD community, he immersed himself in the organization's mission to raise awareness and support for those affected by the disease. In 2015, his commitment and expertise led him to assume the position of Patient Advocate, where he worked tirelessly to ensure that HD patients received the care and attention they deserved. Driven by his passion for advocacy and the desire to make a difference, Kevin ultimately ascended to the role of President within WeHaveAFace Canada. In this capacity, he continues to lead the organization with unwavering dedication and a clear vision. Drawing inspiration from James Valvano, he embodies Valvano's spirit of relentless pursuit in furthering Project Change and pushing for positive change in the HD community. Please visit www.wehaveaface.org/change for more information.

James speaks about the Project Change and an array of topics

Dr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease. To watch this episode with video, please go to https://www.youtube.com/watch?v=ZJs8EHEPMag

Please listen to James Valvano interview Jennifer Simpson HDSA on the HDParityAct! It's time to pass the HD Parity Act and remove the two-year waiting period for Medicare and SSDI! We must communicate the dire need of these medical supports and services to the US Congress!

On May 11, 2021, James Valvano will interview Jennifer Simpson (HDSA Assistant Director, Youth & Community Services), to discuss the HD Parity Act! ALS just recently made drastic changes to the description of what ALS is. They furthered their efforts by having unanimous consent by Congress to pass their bill for patients to obtain immediate access to benefits. The HDSA wishes to have the HD Parity Act pass by unanimous consent by Congress for individuals with Huntington's disease to receive the same benefits as our friends with ALS. Act today! - Join the HD Acvocacy Act: https://cqrcengage.com/hdsa/Caucus

Kevin Jess interviews James Valvano about the first season of WeHaveAFace TV

Kevin Jess interviews James Valvano about the first season of WeHaveAFace TV

Louise Vetter, President, and CEO of the Huntington's Disease Society of America (HDSA) speaks with James Valvano about the HD Trial Finder. We must broaden awareness of studies and trials for our Huntington's disease population.

Louise Vetter, President, and CEO of the Huntington's Disease Society of America (HDSA) speaks with James Valvano about the HD Trial Finder. We must broaden awareness of studies and trials for our Huntington's disease population.

WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.

WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.

James Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.

James Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.

Kevin and James talk about events and issues of the day relating to HD advocacy and upcoming events

Kevin and James talk about events and issues of the day relating to HD advocacy and upcoming events

James Valvano speaks candidly with Kevin about his journey to climb mountains for Huntington's Disease

James Valvano speaks candidly with Kevin about his journey to climb mountains for Huntington's Disease

Founder of WeHaveAFace.org, James Valvano Addresses HD/JHD Community about 2019.

Founder of WeHaveAFace.org, James Valvano Addresses HD/JHD Community about 2019.

James Valvano, CEO and founder of WeHaveAFace will be joining our host to discuss their upcoming convention in Orlando, Florida. Please tune in to get all of the details. 

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

Hurricane Matthew is slowly making its way up the coast! We are coming to you LIVE from Saint Cloud, Florida! James Valvano and Mary Etta Robertson.

Hurricane Matthew is slowly making its way up the coast! We are coming to you LIVE from Saint Cloud, Florida! James Valvano and Mary Etta Robertson.

PRE-RECORDED - April 2011 Our incredible special guest today 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 Vimeo and Youtube. James is so passionate and inventive about communicating with our H'Dears that he 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 of advocacy. If you have ever heard the term, "I have Huntington's Disease, but Huntington's Disease doesn't have me"... it came from James Valvano and every bit of that is true! In this episode James talks about his advocacy work for Jane Kogan, Advocacy Manager at HDSA. Tune in for a really great show. Visit: www.WeHaveAFace.org

Monday, March 19, 2012 at 3:30 pm  Back by popular demand and for those of you who couldn't tune in on Friday, this is a show you can not miss... Announcing James Valvano's The Huntington's Disease Project lottery winners... And lots more... HAPPY ANNIVERSARY TO YOU!

Friday, March 16, 2012...  marks the one year anniversary of James Valvano's WeHaveAFace.org. Let's honor this amazing person who has a very huge heart for juvenile Huntington's disease and Huntington's disease advocacy.  James was born and raised in New York to a loving couple Amelia and Joseph Valvano and now lives with them in Florida. Diagnosed with Huntington's disease in 2009, he vowed to use his talent of film making and production to record his advocacy mission and share it with the world. He first coined the phrase "I have Huntington's disease...but, Huntington's disease doesn't have me!"  And that's how he lives every day. WeHaveAFace.org was launched on March 10, 2011. From this humble beginning he now has a team of eight super JHD and HD advocates who work together on numerous advocacy projects. He has literally touched the world with information, education and resources relating to JHD and HD through his films, website and the very first app for Huntington's disease awareness called "Help 4 HD" which he developed and launched here October 17, 2011 on The HD View. James Valvano's "Huntington's Disease Project" is causing a very big stir in the community. Visit his website and view his trailer "The Faces of Huntington's Disease: I am No Longer a Faceless Face" at:  www.wehaveaface.org/feature.html. The world is forever changed because of the heart of this one super-human being. Thank you James, my faithful producer!

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@WeHaveAFace.org Skype: JamesValvano Twitter: WeHaveAFace Vimeo: Vimeo.com/WeHaveAFace YouTube: WeHaveAFace

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:   http://www.youtube.com/watch?v=vVIhQnAaxFw&feature=related

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!!

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.