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Happy Holidays from London to all Advocacy supporters

Ginger IrvineThe cool days of the UK autumn remind us here at the Advocacy that the holiday season and the year’s end are fast-approaching. We enjoyed a fruitful year that included a successful symposium held in Dresden Germany, the introduction of the Glenn Irvine Prize and the continuance of important scientific research in NA. We are very grateful for the support of the NA community of patients, family and caregivers, researchers who devote themselves to finding breakthroughs, those who enthusiastically took part in the NA Coffee morning and the very generous donors who are so crucial in propelling our efforts into the future. The Advocacy thanks you one and all and wishes you a very happy holiday season!

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Advocacy announces the establishment of the Glenn Irvine Prize

Glenn IrvineWith great pride and excitement the Advocacy announces the establishment of the Glenn Irvine Prize in tribute to the co-founder of our charity. 

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OUTREACH - Cambridge RAREfest to raise awareness of rare diseases

The Cambridge Rare Disease Network is sponsoring its first RAREfest on 30 November and 1 December 2018 at The Guildhall in Cambridge UK to raise awareness of rare diseases, including NA. The Advocacy will be in attendance and tickets are free.

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Annette Chase joins Advocacy as Business Manager

The Advocacy is pleased to introduce the newest member of our team, Annette Chase, who is serving as our Head Business Manager.

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The Advocacy participates in Findacure events

In our continuing effort to learn the latest developments on rare diseases and form connections with others searching for solutions in this area, the Advocacy has participated in Findacure events.

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RESEARCH UPDATE - Sandra Muñoz Braceras, Madrid | Ruth Walker, New York

Sandra Muñoz BracerasLearn about the recent progress of NA researchers around the world who are investigating the causes, mechanisms and pathology of the NA group of diseases. Updates this issue from: Sandra Muñoz Braceras, Madrid | Ruth Walker, New York

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Chorea-acanthocytosis is closely related to diseases with Parkinsonism, dementia, and ataxia

Adrian DanekProminent research published during 2018 in Annals of Neurology has marked a major milestone in NA disease research, confirming that the VPS13 family of genes is implicated not just in NA group diseases like ChAc, but also in dementia and Parkinson's.

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FUNDRAISING - Shop and Help the Advocacy through Give as you Live

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 takes part in their platform.

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Get ready for Rare Disease Day 2019

Since 2008, Rare Disease Day is celebrated globally each year and will next take place on 28 February 2019. This year’s theme is Bridging Health and Social Care, which will focus on ways to facilitate the coordination of patient healthcare needs with medical and other support providers. This, of course, is a topic of tremendous importance to rare disease patients, family and caregivers.

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Coffee Mornings... part of the solution to a cure for NA

Coffee Mornings are an enjoyable way to socialize with friends and acquaintances who want to be a part of the solution to finding therapies and a cure for NA.

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Parrys take part in Tithe Barn sale

Gill and Gordon Parry in North Wales have once again succeeded in promoting NA and raising funds for our work. They displayed their wares at the annual Tithe Barn sale in Hawarden. With more than the usual people attending they raised over £600 through sales, proceeds from the raffle, door entrance and a cake sale prepared by church colleagues. They will also run two lunchtime sales at the Tithe Barn and the town hall in Llangollen Christmas event. We wish them well and thank them profusely for their grand efforts on our behalf.

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Marianne Aston nominates the Advocacy in will legacy

We were delighted to receive this note from Marianne Aston when she chose the Advocacy as a beneficiary during the planning process for her will. Read on to discover how, with little impact on the amount you will leave to your beneficiaries, you can nominate charities like the Advocacy to receive a percentage of your estate. Many thanks to Marianne for generously thinking of the Advocacy, and for describing the process for us.

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Seeking Walkers, Runners, Cyclists for NA 

If you're taking on a big personal challenge in the coming year, such as a marathon or other event, we would be thrilled if you'd consider nominating the Advocacy for Neuroacanthocytosis Patients as a chosen charity for raising funds. Read on for ideas on how you can support our cause: finding the causes and treatments for the NA group of ultra-rare neurodegenerative diseases. 

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PATIENT NEWS - Kristi Curtis | Alex Irvine

A selection of updates from NA patients around the world including Kristi Curtis and Alex Irvine.

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Living with NA: a view from Mike Koutis

Mike Koutis, who lives in Winnipeg, Canada, wrote this message on Facebook: it gives an honest and heartfelt view of life with NA. Please feel free to read and share Mike's story.

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Advocacy announces NANews Special Patients Volume 2

We're currently planning a new volume of the newsletter dedicated just to patient news, which means we are keen to hear from you. NANews Special Patients Volume I, which appeared in 2012, received many positive responses from around the world. It is time to repeat this effort as we continue to hear of new patients, families and carers from all continents who are affected by neuroacanthocytosis (NA).

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Polish translation of NA News now available

We are very fortunate that Therese Zoladek from Warsaw who presented at our Dresden meeting (see her recent article here) has kindly undertaken the translation of NANews 30 which is available on our website http://www.naadvocacy.org Thank you, Therese. Anyone who wishes to turn her/his hand to a translation of this NANews, please let us know. The procedure is not difficult and instructions are available. 

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In this issue
Betty and Carl Pforzheimer Donate $250,000 to the Advocacy
Happy Holidays from London to all Advocacy supporters
Advocacy announces the establishment of the Glenn Irvine Prize
OUTREACH - Cambridge RAREfest to raise awareness of rare diseases
Annette Chase joins Advocacy as Business Manager
The Advocacy participates in Findacure events
RESEARCH UPDATE - Sandra Muñoz Braceras, Madrid | Ruth Walker, New York
Chorea-acanthocytosis is closely related to diseases with Parkinsonism, dementia, and ataxia
FUNDRAISING - Shop and Help the Advocacy through Give as you Live
Get ready for Rare Disease Day 2019
Coffee Mornings... part of the solution to a cure for NA
Parrys take part in Tithe Barn sale
Marianne Aston nominates the Advocacy in will legacy
Seeking Walkers, Runners, Cyclists for NA 
PATIENT NEWS - Kristi Curtis | Alex Irvine
Living with NA: a view from Mike Koutis
Advocacy announces NANews Special Patients Volume 2
Polish translation of NA News now available
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