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Dresden: The Volger Family story

(l to r) Sidney and Lieven VolgerWe were introduced to the Volger family from Leipsig at the Dresden meeting in March. Claudia Volger, mother of Sidney and Lieven, accompanied a slide show with the histories of her two sons’ development of NA symptoms and their subsequent care under Andreas Hermann in Dresden.

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Dresden: Issues of patients and caregivers

The meeting in Dresden began with an afternoon devoted to issues of patients and caregivers. The first presentation was from Claudia Volger who introduced us to the stories of Sidney and Lieven, her sons who are under the care of Andreas Hermann and his group.

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Researchers seeking male ChAc patients for infertility in ChAc study

Andreas Hermann and Kevin PeikertNA researchers Andreas Hermann and Kevin Peikert write to let us know they have recently clearly demonstrated infertility in two young male ChAc patients. Additionally, they've confirmed previous findings of male infertility in their ChAc Vps13a KO mouse model. These results provide evidence that ChAc leads to male infertility, but to confirm causality, the research team urgently needs more male ChAc patients who would be willing to undergo a sperm analysis. 

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Rare Disease Day 2018 celebrated in 90+ countries

Cooper and his granddad Mark WillifordRare Disease Day 2018 (the last day in February) was celebrated in over 90 countries and regions and focused on research. Not only do patients need researchers to discover diseases and develop treatments/cures but also researchers need patients to participate in trials to ensure research is meaningful. 

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PATIENT NEWS - Thomas Shobith | Ernesto Montero | Manon Sauvageau

Pilar MonteroA selection of updates from NA patients around the world.

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In Memoriam

Eric WillifordRemembering NA Patients Eric Williford and Rebekah Grace.

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FUNDRAISING - Marietta Krikhaar Coffee Morning | Gill & Gordon Parry Craft Fayre | Cooper Williford School fundraiser

Cooper WillifordAmongst the fundraising activities which took place were a Coffee Morning, a Craft Fayre and a school fundraiser by Cooper Williford during Rare Disease Day for McLeod's Syndrome in memory of his great uncle Eric.

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In this issue
9th International Meeting on Neuroacanthocytosis Syndromes discusses way to future treatment
Dresden: The Volger Family story
Dresden: Issues of patients and caregivers
Researchers seeking male ChAc patients for infertility in ChAc study
Rare Disease Day 2018 celebrated in 90+ countries
PATIENT NEWS - Thomas Shobith | Ernesto Montero | Manon Sauvageau
In Memoriam
FUNDRAISING - Marietta Krikhaar Coffee Morning | Gill & Gordon Parry Craft Fayre | Cooper Williford School fundraiser
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