WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount! Visit: www.WeHaveAFace.org/Radio for more information.
…
continue reading
Host, Kevin Jess, talks about Rare Disease Day which is just around the cornerKirjoittanut WeHaveAVoice
…
continue reading
1
New Guidelines to Revolutionize Care for Huntington's Disease Patients
13:05
13:05
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
13:05
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HDKirjoittanut WeHaveAVoice
…
continue reading
1
Bunny Clark and the 10th Annual Huntington's Heroes Walk
13:38
13:38
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
13:38
Bunny Clark talks about The Walk for Huntington's Disease May 28thKirjoittanut WeHaveAVoice
…
continue reading
1
Erin Paterson - Huntington's Disease Heroes
22:20
22:20
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
22:20
Kirjoittanut WeHaveAVoice
…
continue reading
1
WeHaveAFace! What's next?
20:10
20:10
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
20:10
Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.Kirjoittanut WeHaveAVoice
…
continue reading
Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.Kirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Kevin and Jen (Chat #7)
38:35
38:35
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
38:35
Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's CommunityKirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Kevin and Jen (Chat #6)
1:00:22
1:00:22
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:00:22
Jen and Kevin talk about hope, testing and other topicsKirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Jen and Kevin (Chat #5)
44:05
44:05
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
44:05
Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25Kirjoittanut WeHaveAVoice
…
continue reading
1
Kevin speaks about memories and nurturing relationships
28:16
28:16
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
28:16
Kevin talks about memories of his wife Sheila and how it's important to nurture friendshipsKirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Jen and Kevin (Chat 4)
44:42
44:42
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
44:42
Jen gets an unexpected call and discussion ensues.Kirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Jen and Kevin (Chat #3)
47:56
47:56
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
47:56
Jen and Kevin chat about disappointments over the years in the Huntington's Disease communityKirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Jen and Kevin (Chat #2)
45:24
45:24
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
45:24
Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.Kirjoittanut WeHaveAVoice
…
continue reading
1
Coffee Talk with Jen and Kevin (Chat 1)
39:12
39:12
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
39:12
Kevin and Jen kick off a series of coffee talks concerning Huntington's DiseaseKirjoittanut WeHaveAVoice
…
continue reading
1
James Valvano and what's next for WeHaveAFace
34:42
34:42
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
34:42
James speaks about the Project Change and an array of topicsKirjoittanut WeHaveAVoice
…
continue reading
1
Dr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease
57:05
57:05
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
57:05
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=ZJs8EHEPMagKirjoittanut WeHaveAVoice
…
continue reading
1
Louise Vetter concerning support for changes to the current diagnostic criteria for Huntington's Disease
29:56
29:56
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
29:56
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 - #PatientsLikeMeKirjoittanut WeHaveAVoice
…
continue reading
1
Erin Paterson speaks about having Huntington's Disease and starting a family
44:39
44:39
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
44:39
Erin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HDKirjoittanut WeHaveAVoice
…
continue reading
1
Kevin Jess speaks candidly about the recent death of his wife Sheila
23:52
23:52
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
23:52
Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.Kirjoittanut WeHaveAVoice
…
continue reading
1
WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!
31:16
31:16
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
31:16
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!Kirjoittanut WeHaveAVoice
…
continue reading
#WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLovedKirjoittanut WeHaveAVoice
…
continue reading
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 …
…
continue reading
1
Jimmy Pollard - Finding Nana's Smile
33:38
33:38
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
33:38
Jimmy Pollard talks about his new children's book, Finding Nana's SmileKirjoittanut WeHaveAVoice
…
continue reading
1
James Valvano: Season 1 of WeHaveAFace TV
1:04:31
1:04:31
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:04:31
Kevin Jess interviews James Valvano about the first season of WeHaveAFace TVKirjoittanut WeHaveAVoice
…
continue reading
1
Dr. Finn of the Mayo Clinic: How and when to talk to children about Huntington's disease.
28:00
28:00
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
28:00
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 perspective…
…
continue reading
1
Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence
54:43
54:43
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
54:43
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…
…
continue reading
1
Grandma has HD and it's okay with Dr. Kelsey Finn
39:22
39:22
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
39:22
Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.Kirjoittanut WeHaveAVoice
…
continue reading
1
HD/JHD Facebook Wish List. What's that about?
43:21
43:21
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
43:21
Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List groupKirjoittanut WeHaveAVoice
…
continue reading
1
Coping with separation anxiety during Covid-19 pandemic
58:19
58:19
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
58:19
Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.Kirjoittanut WeHaveAVoice
…
continue reading
1
#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion
52:04
52:04
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
52:04
#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.Kirjoittanut WeHaveAVoice
…
continue reading
1
A trip down memory lane with Mary Etta Robertson
1:00:46
1:00:46
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:00:46
Mary talks with Leanne and Kevin about yesterday and todayKirjoittanut WeHaveAVoice
…
continue reading
1
German Dr. Ansgar Klimke: New approach for hydroxychloroquine in aerosol form for COVID-19
42:08
42:08
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
42:08
#WeHaveAVoice Radio! German Doctor: Dr. Ansgar Klimke - New approach for hydroxychloroquine in aerosol form for #COVID19 #Coronavirus #Spreaker #CDC #WHOKirjoittanut WeHaveAVoice
…
continue reading
1
WeHaveAVoice: Discussing the Coronavirus (COVID-19)
55:18
55:18
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
55:18
#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDiseaseKirjoittanut WeHaveAVoice
…
continue reading
1
Cherry Chism: When you leave the Roche clinical trial
44:08
44:08
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
44:08
Cherry Chism talks about her husband leaving the Roche TrialKirjoittanut WeHaveAVoice
…
continue reading
1
Louise Vetter, President and CEO of HDSA: HD Trial Finder
40:14
40:14
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
40:14
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.Kirjoittanut WeHaveAVoice
…
continue reading
1
Dr. Peg Nopoulos: KidsHD/ChANGE-HD
35:16
35:16
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
35:16
Dr. Peg talks about the ChAND-HD trial.Kirjoittanut WeHaveAVoice
…
continue reading
1
Jonathan Monkemeyer Rare Disease Day
53:27
53:27
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
53:27
Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHDKirjoittanut WeHaveAVoice
…
continue reading
1
James Valvano: New Horizons After 2020
1:08:58
1:08:58
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:08:58
WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.Kirjoittanut WeHaveAVoice
…
continue reading
1
Jimmy Pollard of CHDI: HD Education on a Global Scale
58:21
58:21
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
58:21
Jimmy Pollard talks about his experiences and imparts lessons to apply to HD caregiving.Kirjoittanut WeHaveAVoice
…
continue reading
1
Gene Veritas: CHDI Therapeutics Conference
53:48
53:48
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
53:48
Gene Veritas talks about his recent attendance at the CHDI Therapeutics Conference.Kirjoittanut WeHaveAVoice
…
continue reading
1
Karen Marais: HD in South Africa
58:34
58:34
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
58:34
Karen Marais talks about her relationship with her partner Chris who has Huntington's DiseaseKirjoittanut WeHaveAVoice
…
continue reading
1
Advocating in suicide prevention and other topics with Sarah Warehime and Dr. Herwig Lange
57:35
57:35
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
57:35
Leanne and Kevin speak with Sarah Warehime, a beginner as a suicide prevention advocate and Dr. Herwig Lange. We talk about a range of topics including suicide prevention and how to get involved.Kirjoittanut WeHaveAVoice
…
continue reading
1
A caregivers experience with behaviorial issues with Huntington's Disease
57:42
57:42
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
57:42
"Kay" talks about her relationship with her best friend who has Huntington's Disease and how her mood swings are affecting important decisions she has to make.Kirjoittanut WeHaveAVoice
…
continue reading
Kevin Jess reads an excerpt from his novel that is still in progress.Kirjoittanut WeHaveAVoice
…
continue reading
1
One woman's experience with testing for Huntington's Disease
1:10:23
1:10:23
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:10:23
Kevin Jess talks with his daughter about her recent experience with testing for Huntington's DiseaseKirjoittanut WeHaveAVoice
…
continue reading
Our panel of speakers for our Convention in November, 2019Kirjoittanut WeHaveAVoice
…
continue reading
1
James Valvano talks with Kevin about his climb in Scotland
1:10:03
1:10:03
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
1:10:03
James Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.Kirjoittanut WeHaveAVoice
…
continue reading
1
Juvenile Huntington's Disease: A Story of Friendship
47:34
47:34
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
47:34
Kevin speaks with Rebecca Bratt, Erin Wade's best friendKirjoittanut WeHaveAVoice
…
continue reading
Kevin and Leanne speak with Cindy Moore, President of WeHaveAFace CanadaKirjoittanut WeHaveAVoice
…
continue reading
1
Episode 104 - Milestones
21:04
21:04
Toista myöhemmin
Toista myöhemmin
Listat
Tykkää
Tykätty
21:04
Kevin Jess talks about milestonesKirjoittanut WeHaveAVoice
…
continue reading