Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy

Once Upon A Gene

English - September 07, 2023 11:00 - 47 minutes - ★★★★★ - 258 ratings
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ONCE UPON A GENE - EPISODE 197
Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy

Ryan Sheedy is a dadvocate and the Co-Founder of My Mejo. He shares his journey of courage and determination to provide a service for the rare disease community through My Mejo and of being a rare dad.

EPISODE HIGHLIGHTS

Can you tell us about your journey as a rare disease dad?
My wife and I found out unexpectedly that we were having twins and that has been the theme of our journey-- you can think and prepare for what will happen and then throw it out the window because you're not in control. Reynolds and Campbell are five and a half years old. We weren't aware of complications with the twins, my wife had a scheduled c-section and we were excited to meet our babies. When they were born, it wasn't the joyous moment we imagined experiencing because both babies immediately experienced complications. That began our journey of a lot of unanswered questions, research, praying, hoping and tests.

What was the motivation for starting the My Mejo platform?
During the time in the NICU and trying to keep all the information organized and detailing it for sharing, I drafted the idea to solve the problem of remembering everything and connecting the dots. I created a one pager of all Reynolds' key information and I'd provide it to all new providers and therapists. Reynolds was the inspiration for the platform, but I'm inspired daily by the people I get to meet because of the platform. We launched in June 2022 and today we have 1,400 users using the platform across the country.

How does the My Mejo platform work?
My Mejo allows you to collect and consolidate all the information you may need into one place and allows caregivers to provide all the information relating to a child to healthcare professionals or other caretakers. We have a section called Getting to Know Me where parents can note personal details that humanize medical encounters. We work on simplicity everyday- on keeping the platform super simple and very useful. Instead of information being scattered across different places, My Mejo allows you to organize information in a format that is easy on the eye in a version that can be downloaded into a .pdf file, journal, playbook or through text or email with controllable access rights. I should also mention that the platform is completely free for families to use.
Exciting News! We've partnered with Dante Labs, the global leader in genomics, for a series of podcast episodes on "Once upon a gene". Discover their Rare Disease Health Package offering comprehensive Whole Genome Sequencing for rare disease patients. Uncover the mysteries of your genetic makeup and find potential treatment options. Learn more at us.dantelabs.com #Genomics #RareDiseaseHealth #DanteLabs #OnceUponAGene"

LINKS & RESOURCES MENTIONED
Mejo
https://www.mymejo.com/
Global Genes 2023 RARE Advocacy Summit
https://globalgenes.org/event/rare-advocacy-summit/
Costello Syndrome Family Network
https://costellosyndromeusa.org/
Dante Labs
https://us.dantelabs.com/
International Rett Syndrome Foundation
https://www.rettsyndrome.org/
My Rett Ally
https://myrettally.mymejo.com/

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
Apple Podcasts
https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
Stitcher
https://www.stitcher.com/podcast/once-upon-a-gene
Overcast
https://overcast.fm/itunes1485249347/once-upon-a-gene

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

Interested in advertising on Once Upon a Gene? Email [email protected] for more information!

ONCE UPON A GENE - EPISODE 197

Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy

EPISODE HIGHLIGHTS

Can you tell us about your journey as a rare disease dad?

My wife and I found out unexpectedly that we were having twins and that has been the theme of our journey-- you can think and prepare for what will happen and then throw it out the window because you're not in control. Reynolds and Campbell are five and a half years old. We weren't aware of complications with the twins, my wife had a scheduled c-section and we were excited to meet our babies. When they were born, it wasn't the joyous moment we imagined experiencing because both babies immediately experienced complications. That began our journey of a lot of unanswered questions, research, praying, hoping and tests.

What was the motivation for starting the My Mejo platform?

During the time in the NICU and trying to keep all the information organized and detailing it for sharing, I drafted the idea to solve the problem of remembering everything and connecting the dots. I created a one pager of all Reynolds' key information and I'd provide it to all new providers and therapists. Reynolds was the inspiration for the platform, but I'm inspired daily by the people I get to meet because of the platform. We launched in June 2022 and today we have 1,400 users using the platform across the country.

How does the My Mejo platform work?

My Mejo allows you to collect and consolidate all the information you may need into one place and allows caregivers to provide all the information relating to a child to healthcare professionals or other caretakers. We have a section called Getting to Know Me where parents can note personal details that humanize medical encounters. We work on simplicity everyday- on keeping the platform super simple and very useful. Instead of information being scattered across different places, My Mejo allows you to organize information in a format that is easy on the eye in a version that can be downloaded into a .pdf file, journal, playbook or through text or email with controllable access rights. I should also mention that the platform is completely free for families to use.

Exciting News! We've partnered with Dante Labs, the global leader in genomics, for a series of podcast episodes on "Once upon a gene". Discover their Rare Disease Health Package offering comprehensive Whole Genome Sequencing for rare disease patients. Uncover the mysteries of your genetic makeup and find potential treatment options. Learn more at us.dantelabs.com #Genomics #RareDiseaseHealth #DanteLabs #OnceUponAGene"

LINKS & RESOURCES MENTIONED

Mejo

https://www.mymejo.com/

Global Genes 2023 RARE Advocacy Summit

https://globalgenes.org/event/rare-advocacy-summit/

Costello Syndrome Family Network

https://costellosyndromeusa.org/

Dante Labs

https://us.dantelabs.com/

International Rett Syndrome Foundation

https://www.rettsyndrome.org/

My Rett Ally