The Advisory Board of the Advocacy for Neuroacanthocytosis Patients has the pleasurable task this year of awarding a prize in honour of the late Glenn Irvine, co-founder of the Advocacy. This prize will be an award of GBP 5,000 to a junior investigator, to encourage them to pursue further research in the field of neuroacanthocytosis, with the ultimate aim of curing this relentlessly progressive neurodegenerative disorder. We are currently considering a number of basic science contributions on VPS13A function, published between 2016 and 2019, and will choose the most promising candidate with respect to their potential future contributions in advancing towards a cure for neuroacanthocytosis.

The recipient of this award will receive the prize money as support for their ongoing and future laboratory work in the field, and will be invited to give a presentation at our next international conference on neuroacanthocytosis, which will take place in Barcelona in March 2020. We anticipate that this prize will be awarded biennially to coincide with our annual meetings.

The Advisory Board is comprised of Ruth H. Walker, MB, ChB, PhD; Adrian Danek, MD; Nancy Glynn and Bella Starling.

In November 2018 Adrian Danek and Ginger Irvine attended a unique event commemorating the life of the late Professor David Marsden (1938-98). It was organised by UCL Institute of Neurology and the National Hospital for Neurology and Neurosurgery Queen Square, London, and brought together colleagues and friends from far and wide.

Learn about the recent progress of NA researchers around the world who are investigating the causes, mechanisms and pathology of the NA group of diseases. 

The Advocacy is now taking part in the Give as You Live online fundraising platform. We invite all our UK supporters to join us in this effort to raise funds for the Advocacy. Give as you Live will donate to our charity, at no cost to you, a percentage of the money you have spent on a purchase made at a company that participates in their platform.

After a fundraising drive over the course of the last six months, the Advocacy has received over £24,000 in donations from friends far and wide. We send heartfelt thanks and encourage others who'd like to make their donations to do so through the website http://www.naadvocacy.org or by contacting Ginger by email directly.

Our heartfelt thanks are once again sent to Gill and Gordon Parry in Hawarden North Wales for their donation of £4000 raised last year in their many charity events. In fact they will be packing up their wares and journeying to Cilcain once again where they take over the running of a friendly cafe: the cafe's earnings, including a raffle, are earmarked for the Advocacy. We are forever grateful - thank you!

A selection of updates from NA patients around the world.

Tammy Finn Petrick writes that her husband Eddie died ten years ago: "Eddie was always very strong and hard working. I started noticing he would trip over what looked like nothing and almost fall. He would always say it was nothing. His boss sent him home one day and said he fell completely over in front of a forklift, and it wasn’t the first time something like that had happened."

This year’s Rare Disease Day on February 28th was celebrated by a record 101 countries worldwide; read all about the activities and events and view the videos of stories translated into 35 languages. This superb collection of stories, photos and videos help us all to remember that, collectively, rare diseases are not rare but affect millions of families across the globe. Read and watch more about Rare Disease Day 2019 here.  

From Teresa Zoladek we received this report about Rare Disease Day 2019 at the Institute of Biochemistry and Biophysics Polish Academy of Sciences.