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Welcome to Issue 35

MaskWhat a year 2020 has been. We hope this issue of NA News finds you well and coping with the unprecedented challenges that the pandemic has posed. In this issue we'll talk about exciting developments in NA research, a new emergency card available for free to patients and families, thoughts on brain donation, and a look at speech intelligibility throughout the course of NA. For the latest updates from the Advocacy, don't forget to follow our Facebook page.  

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Plan now for Rare Disease Day 2021

Rare Disease DayRare Disease Day is held on the last day of February every year to raise awareness of rare diseases.  28 February 2021 will be the fourteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. Learn more here. You can raise funds for NA Advocacy research. See our website for ideas.

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Hear the latest from the NA Advocacy in the US

Susan WagnerGreetings from Susan Wagner of NA-USA. With autumn 2020 in full swing, and with all the challenges the year has posed, I hope you have had some unexpected positive experiences which has made this a memorable year other than just COVID-19 related. Rethinking and readjusting, the how, where and when to vacation/holidays, has hopefully, tapped into your creative side. Enjoyment of the simpler things in life; puzzles, reading, cooking, the outdoors, has been calming and productive at my end. NA-USA members continue to work on the logistics and organization of NA-USA.

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NA PEOPLE: Thanks and best wishes to Giel Bosman

Giel BosmanAdrian Danek writes to wish a happy retirement and thanks to colleague Giel Bosman. The reminder how rapidly time flies was inevitable to perceive, when our colleague and friend Giel wrote to us about his retirement from his university as of this September. Dr. G.J.C.G.M. Bosman (the Dutch go at great lengths with their first names) had served as a professor in the biochemistry department at Radboud University Nijmegen for more than a quarter century, researching and publishing proficiently in the field of red cell physiology and aging.

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Adrian Danek reports from 10th European Conference on Rare Diseases and Orphan Products (ECRD)

Adrian DanekThe current situation has brought about new ways to meet and interact: very few people by now have not had their own experiences with virtual meetings. Among these was the 10th European Conference on Rare Diseases and Orphan Products (ECRD). I would not have been able to join an in-person convention in Stockholm but was able to participate in that my first virtual meeting thanks to the Advocacy. I was truly impressed by the introductory presentation of David Lega, a Swedish Member of the European Parliament. Lega pointed out inequalities in allocation of educational and medical resources during the current health crisis and he warned that people with disabilities must not be forgotten in these difficult days.

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Your language skills can help us reach more readers

LanguagesAre you proficient in a non-English language? The Advocacy is seeking volunteers to help us expand our language capability for NANews. You may have noticed on the website that NANews is already translated into German and Polish, but we are keen to expand this further. 

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Ruth Walker speaks at the MDS Virtual Congress 2020

Ruth WalkerIn September Ruth Walker was a key speaker at the MDS Virtual Congress 2020. Over 146 countries are represented and over 20,000 people registered for the event. Ruth spoke about Chorea in the section entitled Therapeutic Approaches to Chorea, Dystonia and Myclonus. She addressed general principles of managing choleric diseases, the pathophysiology of chorea, the mechanism of action of specific agents and choosing the right agents. In her book "The Differential Diagnosis of Chorea” Ruth dedicates this work to “all those affected by chorea, as individuals, family members, and care-givers”. Ruth has also produced a flow chart for the evaluation of chorea which has appeared as a poster at numerous conferences. We are extremely fortunate to have Ruth as a leading member of our NA team.

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Speech intelligibility throughout the disease process

Elina TripolitiElina Tripoliti and Jacqueline McIntosh are speech therapists who have worked with Alex Irvine at the National Hospital in London and the Wolfson Rehabilitation Centre in Wimbledon. They have collaborated to bring us a three part article entitled: Speech, Swallowing and Neuroacanthocytosis (NA).


 

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RESEARCH UPDATE: Adrian Danek and Gabriel Miltenberger-Miltenyi in Munich ¦ Ruth Walker ¦ Rostock Group

Adrian DanekAdrian Danek and Gabriel Miltenberger-Miltenyi provide an update from Munich on the re-established chorein blot diagnosis  ¦  Ruth Walker in New York reports on an article about McLeod’s patients ¦ Rostock group reveals increase of neurodegeneration marker in the blood of neuroacanthocytosis patients.  

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Thoughts on brain donation

Joy NA USAJoy Willard-Williford of NA USA write to us from Florida: "Some families, understandably, have difficulty making the decision to donate their loved one’s (or their own) brain tissue to science. It is unpleasant to think about. It reminds us of our mortality. We prefer to block out thoughts of such things, not to embrace them. My husband Mark and I, however, have four very precious reasons to donate his brain tissue to NA research: Elizabeth, Christopher, Billy, and Emily."

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Get your emergency alert card for patients and families

Patient CardWould you like an emergency alert card to help with communications if a critical situation occurs? The Advocacy was working on designing and printing an emergency card for both patients and carers to be distributed at the Barcelona meeting in March.

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FUNDRAISING: In memory of Ed Ayala | Drew Smith birthday appeals raises funds

Ed with his granddaughter Avah Marley CarvalhoFundraising initiatives, no matter how small, contribute to the essential work of the Advocacy and we are deeply grateful to patients, their families and colleagues for the work they do to raise money for NA research. Here's an update on fundraising activities by Loida and Jacqui Ayala in memory of Ed Ayala, and a hugely successful birthday appeal fundraiser by Drew Smith.

 

 
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PATIENT NEWS: Mark Wagner ¦ Mike Koutis ¦ Alex Irvine

Mark WagnerWe're pleased to present this roundup of news from NA patients around the world.

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Remembering Jerry Pero

Remembering Jerry PeroA tribute to Jerry Pero, who sadly passed away earlier this year.

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In this issue
NA Symposium 2021 update
Welcome to Issue 35
Plan now for Rare Disease Day 2021
Hear the latest from the NA Advocacy in the US
NA PEOPLE: Thanks and best wishes to Giel Bosman
Adrian Danek reports from 10th European Conference on Rare Diseases and Orphan Products (ECRD)
Your language skills can help us reach more readers
Ruth Walker speaks at the MDS Virtual Congress 2020
Speech intelligibility throughout the disease process
RESEARCH UPDATE: Adrian Danek and Gabriel Miltenberger-Miltenyi in Munich ¦ Ruth Walker ¦ Rostock Group
Thoughts on brain donation
Get your emergency alert card for patients and families
FUNDRAISING: In memory of Ed Ayala | Drew Smith birthday appeals raises funds
PATIENT NEWS: Mark Wagner ¦ Mike Koutis ¦ Alex Irvine
Remembering Jerry Pero
Useful links
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