Podcasts about wehaveaface

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.

Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.

Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.

Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community

Jen and Kevin talk about hope, testing and other topics

Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25

Kevin talks about memories of his wife Sheila and how it's important to nurture friendships

Jen gets an unexpected call and discussion ensues.

Jen and Kevin chat about disappointments over the years in the Huntington's Disease community

Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.

Kevin and Jen kick off a series of coffee talks concerning Huntington's Disease

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

Louise Vetter (President and CEO of HDSA) underscores her support for the initiative to change the current diagnostic criteria and introduces the new Huntington's disease support platform - #PatientsLikeMe

Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.

#WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLoved

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

Kas Rodriguez talks about her experience with JHD in regards to her 8 year old son Daniel.

Jimmy Pollard talks about his new children's book, Finding Nana's Smile

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

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

Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. A current anonymous survey is available for parents and guardians to help Dr. Finn with her research. www.WeHaveAFace.org/survey2

Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. A current anonymous survey is available for parents and guardians to help Dr. Finn with her research. www.WeHaveAFace.org/survey2

Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence. Dr. Herwig Lange of the George Huntington Institute of Germany joins the conversation. Topics: What is a Center of Excellence (CoE)? How does a facility become a Center of Excellence? Should doctors diagnose patients earlier so a treatment plan can be put in place? How can environmental factors affect Huntington's disease patients regarding the onset of symptoms? Update from Louise Vetter (CEO/President) of the HDSA regarding Centers of Excellence using telemedicine during these trying times with COVID-19.

Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence. Dr. Herwig Lange of the George Huntington Institute of Germany joins the conversation. Topics: What is a Center of Excellence (CoE)? How does a facility become a Center of Excellence? Should doctors diagnose patients earlier so a treatment plan can be put in place? How can environmental factors affect Huntington's disease patients regarding the onset of symptoms? Update from Louise Vetter (CEO/President) of the HDSA regarding Centers of Excellence using telemedicine during these trying times with COVID-19.

Jen gives a public service announcement concerning our new virtual support group on Mondays.

Jen gives a public service announcement concerning our new virtual support group on Mondays.

Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.

Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.

Kevin Jess speaks with Jen Almeida from the Connecticut Chapter of WeHaveAFace about "Blessings for HD and JHD Warriors

Kevin Jess speaks with Jen Almeida from the Connecticut Chapter of WeHaveAFace about "Blessings for HD and JHD Warriors

Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group

Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group

Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.

Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.

#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.

#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.

Mary talks with Leanne and Kevin about yesterday and today

Mary talks with Leanne and Kevin about yesterday and today

#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDisease

#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDisease

Cherry Chism talks about her husband leaving the Roche Trial

Cherry Chism talks about her husband leaving the Roche Trial

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 26, 2012 Reach2HD is a Huntington's disease research trial sponsored by the Huntington's Study Group and Prana Biotechnology to study whether PBT2 (an investigational drug) is safe and effective and to determine if its effect on cognition and other symptoms including movement and overall function. Study requirements include 8 in-person visits over 6 months and examinations at no cost to you. If you have early to mid-stage Huntington's disease, are at lease 25 years old and if you have a study partner who can come with yo to some of the research visits, this study is for you! Visit: www.WeHaveAFace.org/hsg for more invormation or go to www.huntington-study-group.org. Call: 800-489-7671 if you want to talk to someone about this study. This study is also available in Australia.

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!

Tuesday, September 12, 2011 – Our incredible special guest tonight is Lauren Holder, woman on a mission to bring JHD/HD awareness and advocacy to the World. She is Chapter President of the HDSA North Carolina Chapter in Mebane, NC. She is also participating in the PREDICT-HD Study because she wants to contribute to finding treatments and a cure for HD. “Do it and help the HD community,” she says, encouraging others to take part in HD research. “We're helping the researchers and we're helping ourselves.” She is beautiful and humble; she is the epitome of love and strength. What an amazing young woman whom I am proud to know and love. "There are two types of people...those who live and those who live scared. You won't find me being the latter." Lauren Holder 2011

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

Sunday, May 29 - Our incredible special guests are James Valvano (WeHaveAFace.org) and his A Team comprised of an incredible team of individuals within the Huntington's disease community. These individuals have joined the project to promote the film documentary, and to continue to provide valuable support to others within the JHD/HD community. Advocacy for Huntington's disease is a key part of our daily lives. WeHaveAFace.org was founded to increase international awareness of Huntington's disease through a creative, cinematic form - The film:"The Faces of Huntington's Disease: I am No Longer a Faceless Face" The idea for a full-length documentary followed the overwhelming support of the release of the film: "The Faceless Faces of Huntington's Disease" into the NeuroFilmFestival. Join us  for a very enlightening and interesting program.