Lee Reavey

Husband, father of 4. Co-Founder/CEO of the @ncbrsfoundation… 🧡💚💙 Passionate about #RareDisease “All views are my own."

[NCBRS Worldwide Foundation - Nicolaides Baraitser @ncbrsfoundation]

“Going Global” wasn't just a theme—it was reality! 🌍📷

Relive highlights from the #NCBRS Family Conference USA 2025: research updates and family connections.

Thanks to #CostelloMedical for bringing this video to life. 📷📷#NCBRSRare#RareDisease #NCBRSUSA25 #SMARCA2

[Lee Reavey @lreavey]

I just nominated NICOLAIDES BARAITSER SYNDROME (NCBRS) WORLDWIDE FOUNDATION!

Will You? https://t.co/vkQF6kIq0z

[Lee Reavey @lreavey]

@JFKairport @AmericanAir @ncbrsfoundation I have sent you a DM

[Lee Reavey @lreavey]

This is how @AmericanAir and @JFKairport left our special needs son who has scoliosis, kyphosis and @ncbrsfoundation for 14 hours after our flight got cancelled. The staff were so rude, asked for a wheelchair and blanket they said 'not my problem’ how is this accepable… 🤬😴🥱

[Lee Reavey @lreavey]

@AmericanAir I have sent you a DM

[Lee Reavey @lreavey]

#RareDiseaseDay2025 @rarediseaseday

[NCBRS Worldwide Foundation - Nicolaides Baraitser @ncbrsfoundation]

Today, we start by sharing what #RareDiseaseDay means to our Co-Founder/CEO, @lreavey, and the global #NCBRS community! Learn more about NCBRS at https://t.co/wKdfw8FneW. We’d love your support!

🧡💚💙 #NCBRSRare #RareDiseaseDay2025 #RDD2025 #RDD @RareDiseaseDay

[Lee Reavey @lreavey]

@RareDiseaseDay

@GenePeopleUK @RareDiseasesInt @RareRevolutionM @SanfordCords @Healthinote @DrDuddingbyth @RarePatientVoic @GeneticAll_UK @RareBeacon @PatientWorthy @GlobalGenes @Dazzle4Rare

[Lee Reavey @lreavey]

Today is #RareDiseaseDay2025, a day dedicated to raising awareness and advocating for those living with rare diseases. We're sharing Callum’s story to shine a light on Nicolaides-Baraitser Syndrome (#NCBRS)—the ultra-rare condition he was diagnosed with in 2007.

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[Lee Reavey @lreavey]

By sharing our story, we hope to raise awareness, foster understanding, and support others living with a rare disease like NCBRS.

Join us in spreading the word by using the hashtags below, and thank you for your support! 🧡💚💙
#NCBRSRare #RDD2025 #RareDiseaseDay #RDD

[Lee Reavey @lreavey]

I have just nominated the @ncbrsfoundation to win a £1000 donation. This £1000 would be a great help so they can continue supporting the global #NCBRS community. Please nominate them as well, click the link below; details are prefilled...

Thank you... https://t.co/lqSUDdutYu

[Lee Reavey @lreavey]

#NewProfilePic

[Lee Reavey @lreavey]

Many thanks @UCLIoN for sharing about the @ncbrsfoundation’s inaugural family conference…

We are immensely grateful to @StephanieEfthy1 for all she is doing to support our global #RareCommunity 🧡💙💚 #NCBRSRare #NCBRSFamilyConferenceUK2024

[UCL Queen Square Institute of Neurology @UCLIoN]

Over a transformative weekend, members from @IonSynapse participated in an event organised by @lreavey for families dealing with Nicolaides-Baraitser Syndrome (NCBRS), including talks by @StephanieEfthy1. https://t.co/1OGy8CQ2DJ

[Lee Reavey @lreavey]

@GenePeopleUK @RareDiseasesInt @RareRevolutionM @SanfordCords @Healthinote @DrDuddingbyth @RarePatientVoic @GeneticAll_UK @RareBeacon @PatientWorthy @GlobalGenes @Dazzle4Rare

[Lee Reavey @lreavey]

Today is #RareDiseaseDay2024, and I’m raising awareness about the #RareDisease that my son Callum has, called Nicolaides-Baraitser Syndrome (#NCBRS).

👇👇👇

[Lee Reavey @lreavey]

Remember to use the hashtags in this post to spread the word about @RareDiseaseDay and the @NCBRSFoundation. Thank you for your support... 🧡💚💙 #NCBRSRare #RDD2024 #RareDiseaseDay #RDD