Tag: VEDS

The DiSCOVER Trial: Part 2

The DiSCOVER Trial: Part 2

Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States. 

Learn more about the DiSCOVER Trial at discoverceliprolol.com 

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links mentioned in the episode:

DiSCOVER Trial:

discoverceliprolol.com 

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Team VEDS- Pacific Northwest Walk for Victory

https://give.marfan.org/teamvedspnw

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

The DiSCOVER Trial: Part 1

The DiSCOVER Trial: Part 1

Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States. 

Learn more about the DiSCOVER Trial at discoverceliprolol.com 

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links mentioned in the episode:

DiSCOVER Trial:

discoverceliprolol.com 

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Team VEDS- Pacific Northwest Walk for Victory

https://give.marfan.org/teamvedspnw

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

Jared Griffin

Jared Griffin

Jared Griffin, CEO and Founder of Annabelle’s Challenge, shares his experience with getting his daughter’s diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS), and experience starting Annabelle’s Challenge, a UK Charity for VEDS, more than 10 years ago.

Learn more about VEDS and Annabelle’s Challenge at https://www.annabelleschallenge.org/

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links mentioned in the episode:

Otto Nitschmann, who passed away April 20, 2023, shares his story with VEDS
https://staying-connected.blubrry.net/2022/04/16/otto-nitschmann/

REDS4VEDS Day, hosted by Annabelle’s Challenge
https://www.reds4veds.org 

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Emily Ranta

Emily Ranta

Today we hear from a previous guest, Emily Ranta, who was on the show in 2018. In this episode, she’ll share her experience with a bowel perforation and how her life with VEDS has been since her last interview.

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

 

Links and events mentioned in the episode

Emily’s first interview on Staying Connected in 2018:

https://staying-connected.blubrry.net/2018/12/30/emily/

REDS4VEDS Day, hosted by Annabelle’s Challenge
https://www.reds4veds.org 

Real Talk: VEDS, with Katie and Bella, the in_VEDS_tigator

https://www.youtube.com/live/Qp9wn3HoDgg?feature=share

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

The Marfan Foundation Symposiums: 

https://marfan.org/resources/educational-opportunities/

 

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

 

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Toni Harrison

Toni Harrison

Today we are gong to hear from Toni Harrison, who was initially diagnosed with hypermobile EDS. After an event, she received genetic testing that showed she actually has VEDS. In this episode, she is going to share her experience and how her VEDS diagnosis impacts her life. 

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links and events mentioned in the episode

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

The Marfan Foundation Symposiums: 

https://marfan.org/resources/educational-opportunities/

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Clare Stacey

Clare Stacey

Today we are gong to hear from a member of our community in the UK, Clare Stacey, who was diagnosed with VEDS following her mother’s death when Clare was 14 years old. In the episode, she is going to share how her understanding of and interaction with her VEDS diagnosis has changed as she has gotten older and dealt with medical events of her own. 

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links mentioned in the episode:

The Rare Disease Podcast 4 Medics: Not Just Hypermobility

https://podcasts.apple.com/us/podcast/not-just-hypermobility/id1591571033?i=1000562501357

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference:

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Support

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Trailer: Season 5

Trailer: Season 5

Clips from the upcoming season of Staying Connected, available on March 25 wherever you listen to podcasts.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

What Medical Professionals Should Know about VEDS

What Medical Professionals Should Know about VEDS

Over the last few seasons of Staying Connected, I’ve asked some of our community members living with or caring for loved ones with Vascular Ehlers-Danlos Syndrome (VEDS) what they think medical professionals should know about VEDS. This special episode is a compilation of some of those responses.

There are several organizations providing information and support for people affected by VEDS and medical professionals. Some of those are The VEDS Movement, Annabelle’s Challenge, and the Ehlers-Danlos Society. I encourage you to visit their websites and learn more.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.