Signalise: a Dazzle4Rare Podcast

EP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytelling

Content Warning: Some parts of this discussion may be distressing or trigger difficult thoughts and feelings for some listeners. If you are experiencing grief, sadness, or struggling to cope, help is available. Please reach out to a medical or mental health provider or speak to someone by phone by dialling at 116 123 for the Samaritans UK or dialling 988 in the US mental health support.---
Daniel DeFabio is a Menkes disease Dad, rare disease advocate, and Producer for DISORDER: The Rare Disease Film Festival, among so many other projects! He has a long history of engaging audiences with online content creation. In this episode, we touch on grief, its appearance in the Marvel Universe, and the art of rare disease storytelling. Signalise listeners are also treated with a big announcement for a new show launching in December 2022 on The Disorder Collection channel.
 
Since his entrance into rare disease life with the birth of his son in 2008, Daniel created the Rare Disease Film Festival with Bo Bigelow and co-hosts Once Upon a Gene TV with host Effie Parks and co-host Bo Bigelow. You can find more content on rare disease parenting, the loss of a child, and more below.  You can learn more about Daniel and his projects on Facebook, Instagram, or find Daniel on LinkedIn. 
---Blog Post: 
“The evidence of my son’s impact”
Daniel's Disorder Collection Profile:  https://www.thedisordercollection.com/danieldefabiospeaker
Once Upon a Gene TV EP5
https://youtu.be/7DkLH8_hu5o
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP9 - How rare communities will use emergent ”Metaverse” concept for social media and patient engagement with guest Sean Gordon

Sean Gordon is the Founder and Chief Volunteer Officer of RareFundingTeam. Sean was diagnosed with an adult onset condition, Adult Polygulcosan Body Disease.
After this life-changing rare disease diagnosis, Sean founded Rare Funding Team with the goal of bringing together communications professionals and rare disease organizations on a pro-bono basis. 
Sean has been developing a concept around a "Metaverse" or "Web3" and how it could benefit Rare Disease patient communities.
 
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RRM Article
https://rarerevolutionmagazine.com/merging-the-metaverse-and-the-rare-disease-community-join-the-conversation/
Contact Sean: https://www.rarefundingteam.com/contact
Sean Gordon's social media
Linkedin - https://www.linkedin.com/in/sean-gordon-a510609/
Facebook - https://www.facebook.com/Rarefundingteam---
Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague.

EP8 - David Ross, Men’s Mental Health Advocate in Rare Disease

David Ross is a patient advocate for Rare Disease Mental Health, a virtual chat support group for men with rare conditions to talk about their mental health. This is a safe space for men to talk about their ups and downs and support one another.
 
David's social media: 
LinkedIn - https://www.linkedin.com/in/david-ross-844965171/
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague. 

EP7 - Programme notes, community news, and NET Cancers awareness

Now that we are in our second month of Signalise: a Dazzle4Rare podcast and a few episodes under our belt, we will be moving to a bi-monthly schedule. This means today’s episode is short, and our next episode will be a full-length one starting .
Join the rare disease men's mental health virtual meetings with it David Ross. For details connect with him on LinkedIn or Twitter at MaleZebra2020. Learn about World NET Cancers this month by visiting this website. 
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https://www.neuroendocrinecancer.org.uk/. If you're interested in where rare disease communities online may be heading in the future, check out Sean Gordon's quarterly article in RareTech for Rare Revolution Magazine here. 
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP6 - How physical features can help point to a rare genetic condition

We're entering the month of November with seven rare disease awareness days. In this episode, we're also calling back to our conversation with Lee Reavey of NCBRS on the topic of morphology, or in a medical context, the study of features in genetic conditions. In the context of our discussion, morphology or the physical examination of features led the two visiting consultants at Great Ormond Street Hospital to make an NCBRS diagnosis. This type of examination has helped medical professionals identify genetic conditions for decades, if not centuries. Disclaimer: I am not a medical professional. Nothing discussed in this episode should be taken as definitive or comprehensive information. No content presented here is to be considered advice or diagnostic. The purpose of this episode is to open a dialog to discussion, education, and awareness. If you have any concerns about yourself or a loved one, speak to your medical practitioner immediately. 
 
EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundationhttps://signalise.podbean.com/e/lee-reavey-ncbrs-worldwide-foundation/
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP5 - Sci-Fi and Horror Heroes, spooky jokes, problematic depictions of rare disease and more

This episode is rated G for all the ghouls and goblins!
Finally! If you’re like me, you love Spooky Season! Whether its the pumpkin spice lattes (and everything else), the fun decorations, (or as I say in our home “year-round décor”), or the chance to dress up; it’s a great time to express your creativity. 
In this episode of Signalise: a #Dazzle4Rare podcast,  we’re going to cover a few subjects: actors with rare conditions in the sci-fi and horror genres, problematic films depicting rare conditions, some tips for your trick-or-treat journey, and some corny jokes sprinkled in! 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation

Lee Reavey is the Co-Founder and CEO of the NCBRS Worldwide Foundation. He co-founded NCBRS Parent Support Group in May 2010. Lee’s son received a diagnosis Nicolaides-Baraitser Syndrome as only the seventh known case of NCBRS in the world. At that time, there was very little, if any, information available online. 
NCBRS is related to a gene variant of SMARCA2 but more research is needed. ⬇️⬇️
NCBRS website - https://bit.ly/3S5S8uY 
NCBR patient registry - https://bit.ly/3D7FJ5g
Facebook - https://www.facebook.com/ncbrsworldwidefoundation
Twitter - https://twitter.com/ncbrsfoundation
Instagram - https://www.instagram.com/ncbrs/
 
---Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP3 - David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution Magazine

David shares a little about his conditions, Occipital Horn syndrome and Postural Orthostatic Tachycardia Syndrome (PoTS). He shares the early historical link between Ehlers-Danlos syndromes and Occipital Horn in the link to connective tissue and iron storage disorders. We also dive into condition overlap, rare and not-so-rare conditions, and more.
Also, can rare and comorbid conditions work together to help increase awareness? 
Listen to hear more about how social media helps make these critical connections.
To find out more about the Rare Youth Revolution internships, contact Rare Revolution and direct your inquiry to Chelsea. You can find their LinkedIn page below. Rare Revolution on LinkedIn
---Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP2 - Sam FIllingham, CEO and Founder at Poland Syndrome Support UK

Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories. 
For our inaugural guest episode, we're glad to welcome friend, advocate, and parent, Sam Fillingham. Sam is the Founder of Poland Syndrome Support UK. According to their website pip-uk.org, "many children are born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community."
Sam shares a bit about Poland syndrome, how they got started, and their new patient registry, changing the lives of patients far and wide. 
 
Join the register ➡️ https://pip-uk.org/poland-syndrome-community-registerLearn about the clinic ➡️ https://pip-uk.org/poland-syndrome-clinicCase study ➡️ https://bit.ly/3EmA3Wb
---Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare on Facebook, Instagram, Twitter, and Pinterest. You can find host Kimberly on LinkedIn at @kattague. 

EP1 - Welcome to Signalise: a #Dazzle4Rare podcast

Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories. 
 
This episode introduces your host, Kimberly, and her mission to signal-boost undiagnosed and rare stories. 
 
Kimberly touches on her own experience with Ehlers-Danlos syndrome in this episode, find out more about the Ehlers-Danlos syndromes here: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
 
Don't miss an episode of Signalise! Be sure to FOLLOW or SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare on Facebook, Instagram, Twitter, and Pinterest. You can find Kimberly on LinkedIn at @kattague. 
 
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More about Dazzle4Rare
 
#Dazzle4Rare is a cross-community undiagnosed and rare disease awareness week. Unlike most awareness events, this week is meant to enable rare disease communities of all sizes to share messages for one another, signal boosting the messages to reach a wider audience. The base concept is simple – when you share for another community, they can reach your audience who may benefit from hearing their message or learning more about that. In doing so, others will share YOUR message enabling you to reach an audience you would not normally.
Official website: https://www.dazzle4rare.net/