Scott Tarpey | MyMyelitis

Living with MOGAD since 2020.

Sharing support, education and lived experience.

Book a 1-to-1 MOGAD consultation ↓

[Scott Tarpey | MyMyelitis @MyMyelitis]

Hey everyone!

I've recently opened free one-to-one MOGAD support conversations through MyMyelitis.

These calls are a calm conversation with someone who understands the lived experience of MOGAD. NOT medical advise.

If that would be helpful:
https://t.co/ejtweWhtPn

[The MOG Project @TheMOGProject]

Important work by @antibodypad & team on the ‘Timing of MOG-IgG Testing Is Key to 2023 #MOGAD Diagnostic Criteria’ -

Link: 👉🏻 https://t.co/0vVTpm8h6m

Timing of testing is critical at disease onset. “A MOGAD diagnosis may be missed in patients who were not tested at presentation. This will be inevitable in patients presenting before the development and refinement of the MOG-IgG assay but will likely continue in smaller numbers going forward if patients do not receive timely serologic evaluation.”

[Scott Tarpey | MyMyelitis @MyMyelitis]

After a 6 month break from MyMyelitis, I'm finally back with a new video! 😀

Watch the video to find out what I've been up to, my latest #MOGAD health updates, and the plans for MyMyelitis in the future!
🔽🔽🔽
https://t.co/TO3SC6Sy86

[The MOG Project @TheMOGProject]

@JustJen_K & Julia L combined mathematical data, science & art to create our new #MOGAD 2023 logo that represents the voices of patients living with MOGAD. Their experiences, diagnosis, hope, present & future were captured by >720 respondents. 1/2 🧵

[The MOG Project @TheMOGProject]

If you or your child have #MOGAD, please complete this survey with @MS_Australia as Aus researchers look to design a clinical trial to understand the most optimal treatment/s for MOGAD. @MyMyelitis @RebeccaSalky @BroutmanJim @JustJen_K @tatianamaryana

https://t.co/NqkAzovlAu

[The MOG Project @TheMOGProject]

Is the wait & see approach the right approach when treating the first attack of #MOGAD or should Pts be given a choice? Listen to @AVishnevetsky talk about the timing of treatment & managing attacks in MOGAD on an acute & preventative level. 👇🏻
https://t.co/d40blCWTKH

[The MOG Project @TheMOGProject]

The 🔥 topic in neuroimmunology podcast: ‘Overlaps & Differences Between #MOGAD, #MS & #NMOSD’ with our Australian experts @RussellCDale, @darshi_r & @FabienneBrilot with our co-hosts @JustJen_K & Julia L is now available on YouTube! MUST LISTEN👇🏻 1/2

https://t.co/JxOzk120oe

[SRNA @wearesrna]

@TheMOGProject Rewatch the conversation to hear more about Scott's story and how he's become a passionate advocate only three years after being diagnosed with MOGAD. 

https://t.co/eskd0YNhwj

[SRNA @wearesrna]

Scott Tarpey, founder of MyMyelitis and community member of SRNA and @TheMOGProject joined our Community Roundtable last week as part of our online MOGAD Together event.

[The MOG Project @TheMOGProject]

Patient Pathway to Diagnosis of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (#MOGAD): Findings from a Multinational Survey of 204 Patients! Congrats to @Drjonsantoro, @jackie_palace, together with @TheMOGProject’s Jen & Julia L! 👇🏻
https://t.co/uq2wSgBFP5

[The MOG Project @TheMOGProject]

MOG-BLOG follow up Qs/takeaways from the #MOGAD roundtable in MA. Thank you to @chenmayo, @mlevy18, @Drjonsantoro, @ESotirchos, @darshi_r, Brenda & Tanuja for taking the time to answer these Qs, as well as @JustJen_K & Julia for putting this together!

👉🏻 https://t.co/WRUY5nqaX1

[The MOG Project @TheMOGProject]

Listen to our Aus Ambassador @JustJen_K & Scott from @MyMyelitis provide a detailed explanation with data from our Ignition Survey 2: Fatigue in #MOGAD Pts.

Video: https://t.co/VqPSw3mvYl
Results: https://t.co/9QQKq5s6NP
Article in @MSJ_Research:
https://t.co/2MStnuGe0G

[SRNA @wearesrna]

April is MOG Antibody Disease Awareness Month! We will be sharing stories, resources, facts, and helpful tips during the entire month of April.

[Scott Tarpey | MyMyelitis @MyMyelitis]

April is MOG Antibody Disease (MOGAD) Awareness Month! Throughout the month, we will share information and videos about the condition to raise awareness and help patients and caregivers.

Comment below: What do you want to know more about #MOGAD this month? I’m curious to know!

[The MOG Project @TheMOGProject]

SAVE THE DATE - MOGcast Podcast alert on the HOTTEST topic in Neuroimmunology. Overlaps & differences between #MOGAD. #MS #NMOSD with our Australian experts @darshi_r, @FabienneBrilot & @RussellCDale with our co-hosts @JustJen_K & Julia L. Link 👉🏻 https://t.co/rNizbDcneA 🧠👁️

[Scott Tarpey | MyMyelitis @MyMyelitis]

#MOGAntibodyDisease does not have approved treatments, but there are currently two clinical trials that could change that!

Satralizumab will be tested to see if it effectively prevents #MOGAD relapses.

Check out our latest video about it here ⬇️

https://t.co/gtg6gEUsoF

[Scott Tarpey | MyMyelitis @MyMyelitis]

Relapses are one of a patient's biggest challenges with #MOGAntibodyDisease. Learn what a relapse is, how to spot one, and what you need to do in the event of a #MOGAD relapse.

Thank you to @ESotirchos & @TheMOGProject for reviewing.

Read it here⬇️
https://t.co/qhlgfkMeIY

[Scott Tarpey | MyMyelitis @MyMyelitis]

Relapses are one of a patient's biggest challenges with #MOGAntibodyDisease. Learn what a relapse is, how to spot one, and what you need to do in the event of a #MOGAD relapse.

Thank you to @ESotirchos & @TheMOGProject for reviewing.

Read it here⬇️
https://t.co/qhlgfkMeIY

[The MOG Project @TheMOGProject]

Register for the new session of #WingOfHope #MOGSloggers support group meeting:
https://t.co/A1mUb8encW

First session of 2023 is February 21, 7:45 EST. See you there!

[Scott Tarpey | MyMyelitis @MyMyelitis]

This week's content updates the Treatment section of our #MOGAD info page. This post discusses the most popular treatments, including those being trialed for patient use.

Thank you to @mlevy18 & @TheMOGProject for reviewing.

Read it here⬇️
https://t.co/xjqEjJ3zsb