Toni A Mathieson (@toninpuk) 's Twitter Profile
Toni A Mathieson

@toninpuk

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

ID: 414705247

calendar_today17-11-2011 11:35:30

200 Tweet

196 Takipçi

366 Takip Edilen

RARE Revolution Magazine (@rarerevolutionm) 's Twitter Profile Photo

"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: youtube.com/watch?v=4gVcI_… NPUK INPDA @Hope4Hollie #rare

RARE Revolution Magazine (@rarerevolutionm) 's Twitter Profile Photo

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... youtube.com/watch?v=1myrzf…

RARE Revolution Magazine (@rarerevolutionm) 's Twitter Profile Photo

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: NPUK BDFA MPS Society UK, here for those with rare diseases

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:
<a href="/NiemannPickUK/">NPUK</a> <a href="/BattenDiseaseUK/">BDFA</a> <a href="/MPSSocietyUK/">MPS Society UK, here for those with rare diseases</a>
RARE Revolution Magazine (@rarerevolutionm) 's Twitter Profile Photo

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... facebook.com/RareRevolution…

CheckRare (@checkrare) 's Twitter Profile Photo

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 checkrare.com/adult-onset-ni…

Chris Walker (@_c_walker) 's Twitter Profile Photo

Thanks to Rushanara Ali MP 💙 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

Toni A Mathieson (@toninpuk) 's Twitter Profile Photo

Thank you Sunderland UK 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

Thank you <a href="/SunderlandUK/">Sunderland UK</a> 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
NPUK (@niemannpickuk) 's Twitter Profile Photo

This year we will be welcoming a very special guest speaker to our Annual Conference! Tony Somers, a professional... fb.me/89LddrdmY

NPUK (@niemannpickuk) 's Twitter Profile Photo

This video tells an incredibly emotional and touching story - one of a brave boy: Lleyton Coombes, and his... fb.me/5EgdHBXAc

NPUK (@niemannpickuk) 's Twitter Profile Photo

We have had an very positive year, and we owe it all to you - our community! This video, which looks back on... fb.me/2hcuRw1od

NPUK (@niemannpickuk) 's Twitter Profile Photo

We are sad to announce that after 25 years NPUK founding member Jim Green, is stepping down from his position on... fb.me/8nDGolOvB

NPUK (@niemannpickuk) 's Twitter Profile Photo

Follow the link to read Vtesse's December 2016 Newsletter, which provides an update on the clinical trial of... fb.me/1rHdpqgNG

NPUK (@niemannpickuk) 's Twitter Profile Photo

We are pleased to share Update #12 on the AIDNPC Clinical Programme, courtesy of Orphazyme: The AIDNPC clinical... fb.me/83i1SYi5N

NPUK (@niemannpickuk) 's Twitter Profile Photo

ASMD PRO Study Development - Opportunity for Patients to become involved in Phase Two: We are pleased to share... fb.me/10xCEvQbR

NPUK (@niemannpickuk) 's Twitter Profile Photo

#RAREvolution: Stand Up for Scientific Research on Rare Diseases! BLACKSWAN Foundation is a Swiss foundation... fb.me/3gbJg0Nf1

NPUK (@niemannpickuk) 's Twitter Profile Photo

In this new video Professor Marc Patterson (Professor of Neurology, Paediatrics, and Medical Genetics - Mayo... fb.me/8pFad1eVu