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Fundraising Events


Many supporters have organised charity events for NA. Here are a few previous ones:


RareDisease Day, February 28,2020

In London, to help raise awareness and funds, the NA Advocacy held a special tour at the stunning Victoria and Albert Museum in London entitled "Red, Scarlet, Crimson: The History of Colour in Art," red being symbolic of acanthocytes. Anne Haworth, a lecturer at the V&A as well as other esteemed art museums and galleries including the British Museum, led the tour,  which was attended by a group of over a dozen NA Advocacy supporters.

The talk was indeed fascinating as we travelled through various rooms of the museum including those devoted to China, Japan, the Islamic Middle East and Britain, learning of the decorative and historical use of red in jewels, stained glass, carpets, silk and other fabrics.


Marietta Krikhaar Sponsors a 2nd Coffee Morning in Support of the Advocacy!


Thank you Marietta once again for opening your home and preparing delicious cakes and biscuits for an NA Coffee Morning in April. These events offer a wonderful opportunity for people to not only help NA patients but to also socialise and learn more about developments in NA care and research. The sum of £400 was generously donated at this event. We urge all our supporters to consider hosting a Coffee Morning as an enjoyable way to further serve the NA community.


Fun and Support for NA at a Welsh Craft Fayre



Gill and Gordon Parry have done it again - this time by raising £400 at a Welsh Craft Fayre!  On 8 April, teas and cakes were sold to walkers and cyclists making their way through the charming village of Cilcain. This event came on the heels of an organza brooch-making workshop in Llaberis near Mount Snowdon where fundraising was also conducted. Countless thanks to you both and to all those who so generously donated!


London Coffee Morning in Support of NA

Charity coffee morning raises £500 in October 2016. Our thanks to Marietta Krikhaar and her friends and neighbours in Clapham, south London for contributing so generously to the NA Fund. 

Marietta made scones and beautiful cakes, and served coffee and tea in lovely china cups and saucers, collected over the years.


Annual Hawarden Trek 2016

The ever-inspiring Gill and Gordon Parry organized yet another walk in support of NA and the Epilepsy Foundation at the Gladstone Estate Park in Wales on 14 May 2016.  Bright sunshine enhanced a delightful day for the successful walkers who earned over £2000 and were rewarded with a trip to the local.


Andante Chamber Choir

from the Scottish Borders

Concert at St Asaph's Cathedral

A succesful fund raising effort with John Stone Choirmaster conducting entertained a large audience in North Wales on the 30th of April 2016; John returned to support the NA Advocacy and St Asaph's with a two part programme of a capello singing with his strong 34 person choir. We thank their them for their efforts and beautiful singing!


Gillian and Gordon Parry 

continue to sell books, hand made items and cards at local fayres;

here's a photo of the recent Christmas fayre



Christina Liu Runs For NA

Christina Liu raised £630 by taking part in the 2016 Rome Marathon on 10 April 2016. With the support of her nurturing Italian host family, the run was a success for both Christina and for NA patients.  Brava!



Charity Craft Fair 6-7 November 2015 London

The second London Craft Fair brought together six returning and six new crafters to sell their wares in aid of NA. Over £1000. was raised.




 Charity Concert 10 November 49 Queen's Gate Terrace London

                         Monday 10th November:  The Linos Piano Trio 

Prach Boondiskulchok - piano                Konrad Elias-Trostmann - violin

Vladimir Waltham - cello


in aid of Advocacy for Neuroacanthocytosis Patients


C.P.E.Bach:               Piano Trio in G Major Wq.90 no. 2
Schumann:              Trio in G Minor, Op. 110

Beethoven:                Piano Trio, Op. 97 'Archduke'


London-based, the award-winning Linos Piano Trio bring together three outstanding musicians of remarkable diversity of experiences and heritage. Between Konrad, Vladimir, and Prach, they share five nationalities, matched by the similarly wide range of their musical backgrounds, which include historically informed performance practice, composing and improvising. All of this is brought together to support a dynamic and refreshing vision of making music.

“The players brought brilliance and élan [to the work] . . . performed with control and tonal intensity . . . the ensemble between these three players was superb . . . Their winning way with slow sustained lines . . . This was a slow-burning, gripping performance, the playing rich and passionate” - The Strad.

This concert is in aid of the Advocacy for Neuroacanthocytosis Patients, an ultra rare neurological disease which affects young adults who develop debilitating movement, speech, eating and uncontrolled action symptoms. The progress of this disease leaves them fully dependent on others and often staying in care. The Advocacy is grateful to for presenting this programme to support patients and families and to contribute to research.

7 for 7.30 pm.  Voluntary donation:£35 to include wine, canapés & supper. Cheques payable to "NA Fund". Send your reservation to: vernon@vef.org.uk


 Craft Fair 5-6 December London






          Join us for a special Christmas fundraiser !

Early December will see the opportunity to purchase gifts for Christmas at the home of Alex, Ginger and Glenn Irvine in London.

This charity craft event on 5 & 6 December 2014 will display a fabulous selection of work - come join us! 

The items will be crafted by Alex Irvine, who designs and prints greeting cards on her computer; Jane Willingale whose jewellery and prints are well known in the craft world, paintings by Barbara Mullarney Wright, Cosmo china, knit ware by Mary Davis and crochet items and bracelets by Jen and Ella Nanton. Contact ginger@naadvocacy.org by email for further details.


 Rare Plants for a Rare Disease

            Saturday, 24 May 2014; Pencaitland nr Edinburgh, Scotland


Organised again by Sheila and Ralph Averbuch, our NANews' publishers, locals and visitors from afar feasted their eyes on colourful plants small and large.They  also had the opportunity to relax with coffee, tea and cakes and to purchase homemade greeting cards designed and printed by NA patient Alex Irvine from London. The event was a huge success with over £1300 raised. Our thanks to Sheila and Ralph and all their helpers on the day- a wonderful day was had by all! You can read about Sheila's gardening successes on her blog www.stopwatchgardener.com

 The Great Hawarden Trek for NA and Epilepsy 

Saturday, 10 May 2014; organised by Gill and Gordon Parry


Alex, Glenn and Ginger Irvine were not able to attend the annual sponsored walk brilliantly organised by Gill and Gordon Parry in Hawarden. Alex missed being carried around the second half of the wonderful leisurely stroll through the woods of the Gladstone Estate in North Wales.  However, reports of the day were positive and many walkers returned to support the event in memory of Sian, David and Mark Parry. The Advocacy is very grateful for the continued support of the Parrys

Hawarden Summer Fair


Gill and Gordon Parry have been been fundraising tirelessly for NA for many years and we would like to pay tribute to their continual efforts with a photo of one of their many days out at fairs, village fetes and local events. This was taken at the Hawarden Carnival in July.


                                                                           Charity Coffee morning to celebrate Rare Disease Day

                                                                                          Friday, 28 February 2014; 10:00-12:00


Eva Stock and Ginger Irvine are inviting their friends to honour the work done by many rare disease charities which add valuable funds for research and support for patients and families. You too could easily arrange an event to raise money for this charity.


                                                    Hadrian's Wall Run - June 23-24, 2012

Team FAST (Fergus,and Anna Cumming and Sophia Berry[...Team?]) was ready at the start line by Carlisle Castle early on Saturday 23rd June 2012, ready for the adventure that lay before us. The 71 miles, several notable hills and the impending inclement weather could not detract from our enthusiasm for getting on with what we had set out to do. Sophia had the first leg of 15 miles, which she completed with ease in a solid time to get Team FAST going before the weather really hit. Fergus was less lucky on the precipitation front but the 17miles still seemed to fly by.  We reached the campsite and pitched our tent in time to enjoy the company of the other weary challengers before the sun set over the serene (yet heavily waterlogged) field.

Sophia continued the journey just after dawn on day 2. Some of the hill ascents required more “scrambling” than running but the checkpoint at 13 miles greeted her with sunshine and lots of rehydration. Anna then took the metaphorical baton (and literal timing chip) and set off on the longest leg of the route, a full 19 miles across fells, paths and roads. The final 7 miles was all downhill, finishing over the Millennium Bridge at Baltic Quay in Newcastle. Team FAST was tired but elated; we had come third out of more than 15 teams and had seen so much beautiful countryside. 2000 years after Hadrian first commissioned the project, for us, the adventure was finally over and raised a little more than £2000.


                                                                    London Marathon 22 April 2012

The Advocacy was thrilled to have a runner in the London Marathon in April. David Lewis, (on the right in the photo), head gardener at the Rooftop Gardens with the Virgin Babylon Restaurant in Kensington managed to finish the course with colleagues from the Virgin Enterprise despite work commitments preventing him from training as much as he had planned. His colleagues encouraged him at the start and David finished because "although it's really, really painful I knew it would be worth it as it was for a very good cause". And as the outfit was already bought he knew he did not have another occasion to wear it!

David manages the garden club at the Rooftop Gardens and is contributing this year's income from the four meetings and raffles to NA. We are truly grateful for his thoughtfulness and are pleased Virgin provides this opportunity for David to contribute to a local charity


                                                 Rare Plants for Rare Diseases 

May 6th 2012 just outside Edinburgh brought together local Scots and over 350 plants for sale- all organised and managed by Sheila and Ralph Averbuch, our highly-valued friends who have voluntarily edited and published on-line 18 issues of NANews. When Sheila broached the subject in the spring she intended to make cuttings and sell them with others she had. On reflection she decided she hadn't enough plants so wrote to nurseries with the tag line of "Rare plant sale for a rare disease" and received over 300 plants from numerous rare plant suppliers! Boosted by targeted marketing and word of mouth they managed to raise over £1000. What a fantastic outcome. Our thanks to them both.


                                                                   Four Men in a Boat

In July 2011 Alex Irvine was treated to a ride down the Thames as cox of a four man boat finishing a four day 150 km voyage from Lechlade to London to raise funds for the Advocacy. Mark Bavington, James Clarke, Ian Weir, and Steven Feeney organised their trip in a week and were rewarded with good weather, interesting campsites and marvelous pubs along the way. Alex was able to steer the boat to the London boat club in Putney. What a sterling performance which raised close to £3000 including gift Aid.


    The Great Hawarden Trek for NA and Epilepsy                        Organisers Gill and Gordon Parry

In May of 2011 more than 100 people in and around the North Wales town of Hawarden met for the trek around the beautiful Gladstone Estate. The event is organised by Gordon and Gill Parry in remembrance of their daughter who suffered from epilepsy and their two sons, who had chorea-acanthocytosis. The thousands of pounds which are raised by this annual event are much needed for scientific research funded by the Advocacy. Alexandra Irvine, assisted by the lads of Hawarden with the converted "sedan chair," joined the walkers for the second half of the trek.