Toni A Mathieson

CEO @NiemannPickUK, wife, mother of three NPC angels, friend and rare disease patient advocate

[Toni A Mathieson @toniNPUK]

Thank you @SunderlandUK for showing your support for the many families impacted by a rare disease.
We are rare, we are #Many #Strong #Proud

#RareDiseases #niemannpick #npc #ASMD #RareDiseaseDay2021

[Chris Walker @_c_walker]

Thanks to @rushanaraali for highlighting the role that charities are playing in the recovery, and that additional support is needed at the Budget to make sure this work continues #RightNow

[CheckRare @CheckRare]

Cara Gilmore, a patient with adult onset Niemann-Pick disease type C (NPC), discusses her diagnostic journey.
@nnpdf National Niemann-Pick Disease Foundation, Inc. NATIONAL NIEMANN-PICK DISEASE FOUNDATION
https://t.co/UErFLJA0ME

[Toni A Mathieson @toniNPUK]

@DrAhadRahim @SimonWad @ProfRJHarvey @duncancraigucl @School_Pharmacy Huge congratulations @DrAhadRahim

[Toni A Mathieson @toniNPUK]

The Easter eggs formerly known as Prince

[Rach @RachaelvsWorld]

Prince as Easter eggs
have a great Sunday

[Nike @Nike]

Now more than ever, we are one team. #playinside #playfortheworld

[RARE Revolution Magazine® @RareRevolutionM]

"IMAGINE" follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia:

https://t.co/icXw8Sg8Yn

@NiemannPickUK
@inpda_org
@Hope4Hollie

#rare

[RARE Revolution Magazine® @RareRevolutionM]

Mum of two Jodie Ann Ogrady speaks openly about how her life has been affected by receiving a Niemann-Pick disease type C diagnosis:

"...Niemann-Pick UK have supported me massively. When Joshua was diagnosed at eight months... https://t.co/zhlybZdrOv

[RARE Revolution Magazine® @RareRevolutionM]

In April the #DementiaStrikesChildrenToo campaign launched in Westminster Tube Station to raise awareness of childhood dementia, and drive for better clinical education of Niemann-Pick, Batten disease, and MPS.

For more info tweet:
@NiemannPickUK @BattenDiseaseUK @MPSSocietyUK

[RARE Revolution Magazine® @RareRevolutionM]

What is the Think Again. Think NP-C campaign, and why is it important?

Currently Niemann-Pick type C disease (NP-C) takes, on average, five years to diagnose. However, NP-C is treatable and so this... https://t.co/xzWDjMcqOF

[NPUK @NiemannPickUK]

In this new video Professor Marc Patterson (Professor of Neurology, Paediatrics, and Medical Genetics - Mayo... https://t.co/uMDiUpX160

[Toni A Mathieson @toniNPUK]

Fire Arrow #playstationlive

[NPRF @niemannpickrf]

https://t.co/T1JHPWRjdS NPRF Newsletter

[NPUK @NiemannPickUK]

#RAREvolution: Stand Up for Scientific Research on Rare Diseases!

BLACKSWAN Foundation is a Swiss foundation... https://t.co/4vMmmFlMie

[NPUK @NiemannPickUK]

We are sad to announce that after 25 years NPUK founding member Jim Green, is stepping down from his position on... https://t.co/fSdBDZaMEq

[NPUK @NiemannPickUK]

Follow the link to read Vtesse's December 2016 Newsletter, which provides an update on the clinical trial of... https://t.co/zQ6zU6mSLD

[NPUK @NiemannPickUK]

We are pleased to share Update #12 on the AIDNPC Clinical Programme, courtesy of Orphazyme:

The AIDNPC clinical... https://t.co/WxS6QP9Wku

[NPUK @NiemannPickUK]

ASMD PRO Study Development - Opportunity for Patients to become involved in Phase Two:

We are pleased to share... https://t.co/M5kramloYt

[NPUK @NiemannPickUK]

We have had an very positive year, and we owe it all to you - our community!

This video, which looks back on... https://t.co/f39Ko1skoc

[NPUK @NiemannPickUK]

This video tells an incredibly emotional and touching story - one of a brave boy: Lleyton Coombes, and his... https://t.co/At1vuiXzs0