Activities around the Globe

We invite all lupus organizations worldwide to send the Lupus Foundation of America information about the activities they will sponsor in celebration of World Lupus Day 2010. Please include as much detail as you wish in these descriptions, and add photos at a later day if you wish to do so. In order to have your activity listed, contact the Lupus Foundation of America with the name, date, and time of the event, as well as the name and location of your organization.

The LFA will post the information you provide on this page as it is received.

IMPORTANT! Please include email contact information for the appropriate person in your organization should another lupus group, the media or any other interested party want to contact you for more information about these activities. ALSO, if you chose to send photos, each organization must inform participants about how the photos will be used and obtain any permission required of the individuals whose pictures would be posted on the World Lupus Day website.

ARGENTINA

Group: Asociación Lupus Argentina . ALUA
Event: - 40º Medical Symposium Open to Community. The Asociación Lupus Argentina - ALUA will be hosting this Symposium about differents aspects to Lupus especially to patients, families, medical and social workers, with free distribution of instructional brochures about the event , WLD buttons and our new magazine : Revista ALUA Nº 13 - May 2010. World Lupus Day - May 10 has been declared of Interest by the Legislative Chamber of Deputies of Argentina. Public Meeting in the Hospital General of Acute "Dr. Carlos G. Durand" in Buenos Aires. We´ll join the Lupus community (health professionals, patients and partners) in celebrating May 10th as World Lupus Day in a public meeting in the General Hospital of Acute "Dr. Carlos G. Durand" in Buenos Aires. We`ll send an informative e-card to friends and family (Courtesy of the LFA) with the WLD Flyer. Lupus information to people who do not have Lupus to help spread the message through the world. We are also working hard with the media (T.V. porgrammes, radio, and newsletters.

We are glad to share some pictures with you from our WLD Events: the 40º Medical Symposium Open to Community and the cover of our new magazine : Revista ALUA - May 2010.

00244 - WLD Argentina - 40ºMedical Symposium Open to Community : Speakers and attendants
00100 - WLD Argentina - President ALUA, Teresa G. Cattoni, makes a presentation at the begining of the meeting
00240 - WLD Argentina - Teresa Cattoni, Dra. M. Cristina Lunic, Prof. Dr. Osvaldo Hübscher and Dr.Luis Catoggio
00162 - WLD Argentina - Dr. Luis Catoggio makes a presentation
alua-13 : Cover of the magazine ALUA 2010 Nº 13

Date: May 10 - 11, 2010
Location: Buenos Aires - Argentina : - Auditorium of Bank of Buenos Aires City, General Hospital of Acute "Dr. Carlos G. Durand" in Buenos Aires
Website: www.alua.org.ar
Contact: info@alua.org.ar

Canada

Group: Lupus Canada
Event: Walk a Block for Lupus
Walk a Block for Lupus is Lupus Canada’s most important annual fundraising and public awareness event. Lupus Canada will be celebrating its 9th Annual Walk a Block for Lupus event in 2010 and we want you, your family and friends to join together to make this our most successful year yet. Walks and other events will take place worldwide to generate awareness of lupus and raise funds to help support services for people living with lupus.
Date: May 2010
Website: You can obtain pledge forms from Lupus Canada, your Provincial Organization, or you can download them from the Walk a Block website www.walkablock.ca
Contact: leanne.mielczarek@lupuscanada.org

Group: Lupus Foundation of Ontario
Event: Niagara KIDZ Walk for Lupus
The Walk will be held in Welland along the old Welland Canal. Other activities include the following. Students -- college, high school and public school -- did presentations about lupus to their fellow students, with our organization supplying literature, wrist bands and books for the school libraries. Information about lupus was placed on display in local libraries, and Tom Mather, president of the Lupus Foundation of Ontario, made presentations to various service groups.
Date: May 8, 2010
Website: www.vaxxine.com/lupus/
Contact: lupusont@vaxxine.com

Group: Lupus Society of Manitoba
Event: Walk a Block for Lupus
Lupus Society of Manitoba is hosting Walk A Block for Lupus on May 16, 2010 at St. Vital Park, Duck Pond. We encourage everyone who has lupus or those living with someone with lupus to attend the walk. Our Provincial walk has grown tremendously over the last four years and we want to grow it even more!
Date: May 16, 2010
Website: www.lupusmanitoba.com/
Contact: lupus@mts.net

Group: Lupus New Brunswick
Event: Walk a Block for Lupus
Lupus New Brunswick will be having our annual Walk a Block event at Centennial Park commencing at 2:00 PM and finishing around 5:00 PM. Following our walk, we will be having our BBQ and a drawing for prizes. Norma Reid, a lupus patient who carried the torch for the Olympics, will speak. Ms., Miss & Miss Teen NB & PEI Pageant contestants will be holding their talent competition live after the walk and the public will participate in the judging. Sky Lines Kite Club will be in attendance with their kites for all to see. Other areas holding walks are Woodstock, Rothesay and Canterbury. All walks on May 8th are at various times of day.
Date: May 8, 2010
Website: www.lupusnb.ca/
Contact: lupins@rogers.com

Location: British Columbia, Canada
Event: Invite people living with lupus, their friends and family from around the world to submit something creative to be included in a virtual art gallery dedicated to lupus
Date: Submission deadline is May 8, 2010
Website: http://lupus.juliasherred.com/
Contact: lupus@juliasherred.com

Europe

Group: LUPUS EUROPE
Event: LUPUS EUROPE is setting up a WLD page on its website. This will include news of WLD events within the 20 countries (22 groups) who are members of LUPUS EUROPE. On WLD, LUPUS EUROPE is also launching an online survey -- Living with Lupus ll -- Career/Work Situation. This will be in 5 languages: English, French, German, Spanish and Italian.
Date: May 10th, 2010
Website: www.lupus-europe.org
Contact: Yvonne Norton at yvonne@wmlg.freeserve.co.uk

Germany

Group: The Lupus Foundation Germany
Event: "1st German Lupus Day." Thanks to the initiative of Prof. Schneider, The Lupus Foundation of German medical advisor and one of Germany's leading lupologists, the "1st German Lupus Day" will take place in Düsseldorfon May 12, 2010. Invited to this medical symposium are all lupologists, rheumatologists and other professionals. On this occasion, the research prize of the Lupus Foundation Germany will be awarded to two scientists. The German Lupus self-help association plans info desks in several towns including the event "40,000 balloons for 40,000 lupus patients in Germany." The group also received about 290 postcards from "postcrossers" all over the world (from 42 different countries) who expressed their support towards lupus patients by sending a butterfly postcard. The echoes on LupusCrossing being so extremely high, we decided to make a poster out of these cards and the texts written on them.
Date: May 12, 2010
Website: http://lupus-rheumanet.de/jsp/oeff_lupustag.faces
Contact: Simone Müller-Pretis, simone.mueller-pretis@lupus-rheumanet.org

Hungary

This year - by favour of Outdoor Scene Margharet Island - the Hungarian Lupus Day was organised in comfortable green area at the Margitsziget. We supposed to invite everybody to have an ease, cheerful Saturday in a family way to speak not only about the discommoded symptoms and medical relations of the lupus.

The roots of this initiation came from the year 2004 when in Eaton (UK) an international committee representing lupus organizations from different nations met to organize the first World Lupus Day. Their proclamation called to action for governments around the world to increase their financial support for lupus research and patient services. Since then in each year at first part of May the lupus patients gather in every corner of the world to express their solidarity for each other to focus for this lesser-known illness.

In this year the programme started at 10:00 am with registration and the collection of the cookies and drawings for the competitions on this fields and with lottery as well. A bit later we could listen Yvonne Norton’s salutation (the chairman of Lupus Europe) which followed by the investiture of the Hevér Krisztina’s Award at first time (Krisztina Hevér, 1974 – 2009, former vice-chair and international contact of our group). One of our members from the city Szekszárd Andrea Kátai won this competition although - unfortunately she could not come to receive this award personally but we had the possibility to hear her life-story. Andrea’s peppy and positive way of thinking can be guide all for us.

We had a tiny accident during the competition of the children’s drawings: the rain started to fall and the drawings almost became damp completely but in the last moment we managed to rescue them. It was difficult to decide who has the best application because all of the paintings and drawings were nice.

On the cake-competition worked a lot Ilona-Bera Istvánné (one of the staff members of our group) - she stakes pades from no one - to prepare cookies - she made more than twenty baking pen gingerbread for the starveling members.

We were not out of even organised cabaret programmes: Orsolya Kálóczi and András Győry singers performed well-known musicals and we could laugh together on Zoltán Maksa’s jokes (Zoltán Maksa is one of our famous humorist). There occurred also amateur presenter in our midst: a ten-year old boy who presented Hungarian folk-songs on flute. During the afternoon one of our patient-mates told fortunes by cards and the enquirers could take part on Bach-therapy and kinesiology consultation.

Probably the one of the best presentations was the number of the Isis Belly-Dancer Group. The dancer ladies (from Sopron city) performed a special own choreography imitated butterflies what even passing promenaders and the workers from the near restaurant admired.

Beside the various programmes the time quickly passed, hopefully everybody enjoyed them.
Let’s meet next time, let’s spend together the international Lupus Day!

Henrietta Balázs
Gabriella Schopper Hungarian Lupus Group

Indonesia

Group: Care for Lupus - SDF
Event: Walk for Lupus, Striving together creating values (poster)
Walk for Lupus consist of: walk for lupus, free medical lupus consultation, fair & bazaar, care for lupus music concert, healthy life talkshow, and lupus animated book for kids launching.
Date: May 2010
Website: www.syamsidhuhafoundation.org
Contact: Dian Syarief at end@cbn.net.id

Italy

Group: Associazione GRUPPO ITALIANO LES ROMA-LAZIO - onlus
Event: LES-people speak-up - a small group of volunteers in a fashionable location right in the centre of the ‘città eterna’ to tell people about their experiences of illness, hope, endurance, coping and facing difficulties, and the ART of enjoying life. ALBERTO SORDI GALLERY – piazza colonna 1, rome italy (close to ‘fontana di trevi’)
Date: May 10 , 2010, h. 12:00-19:00
Website: http://www.lupus-italy.org/
Contact: lupusroma@virgilio.it

Mauritius

Group: Lupus Alert
Event: following activities will be held at the Lupus Alert Library and Driop-in Centre: 1. Open Day at the Lupus Centre as from 9.00 am.The media and supporters of Lupus Alert have all been invited to visit the Centre and meet our members. 2. Distribution of arm supports, walking canes, ripple mattress, raised toilet seats, wheelchairs to needy patients. 3. Presentation of newly acquired books for the Lupus Alert library. Our library has an impressive collection of materials for everyone's enjoyment ranging from healthy reading and living to the arts ,sciences,bestsellers,children's books a reference section, etc. 4. Presentation of an exquisite piece of fund raising silver jewellery -the wings of Hope representing our logo. 5. As in previous years the WLD 2010 posters have been widely distributed by our contacts Reunion, Madagascar, Rodrigues. Lupus Alert sponsored the hip replacement surgery of a young patient from Madagascar in November last year.We have been pleased to welcome also the president of Lupus Reunion at the Lupus Alert Centre. 6. Presentation of Souvenirs Photos of members and their families taken during various activities organised by Lupus Alert. 7. A message in French about lupus will be texted or emailed by our members to as many people as possible to raise lupus awareness on the island and aroung the globe.
Date: May 10, 2010
Website:www.lupusmauritius.com
Contact: Babs Venkatasamy lupusalert@hotmail.com

Malaysia

Group: Malaysian SLE Association
Event: The Malaysian SLE Association held a half-day public forum on 9 May in advance of World Lupus Day based on the theme “Caring for the Lupus Patient”. The theme acknowledges that although lupus is a serious auto-immune disorder, with early diagnosis and proper treatment and care, there is hope for people who have been diagnosed with the disease. The forum speakers comprise doctors who are in the front line of providing care for lupus patients in Malaysia, while the more than 260 participants comprise patients and their family members, nurses and other medical personnel, medical students, and members of the public. There were two simultaneous forums -- one was in Bahasa Malaysia (the national language) combined with English, and one was in Mandarin. Before the start of the public forum, the Executive Committee of the Malaysian SLE Association went on stage to cut the World Lupus Day cake, a cake which had the World Lupus Day logo made of sugar frosting on top of it. This World Lupus Day cake-cutting has been a practice since World Lupus Day 2007. As 9 May was also Mother's Day, children who accompanied their parents to the public forum had a special programme to themselves, i.e., drawing Mother's Day cards with butterflies and decorating pretty cupcakes to put into a gift box, which they tied with ribbons. The proud, smiling faces of the mothers, mainly lupus patients, when the children presented them with their "work of art" was worth all our effort.
Date: May 9, 2010
Website: http://www.lupusmalaysia.org/
Contact: Chee Siew Lian, Executive Secretary, pslem@streamyx.com / pslemhq@gmail.com

The Netherlands

Group: Lupus Patiënten Groep
Event: Talk about your lupus!
According to our tradition, the Lupus Patiënten Groep will organize an online chat session on www.lupuspatientengroep.nl on May 10th from 19.00 to 21.00. Both patients, partners and people interested are invited to join the discussion. Two of our volunteers will lead the discussion.
Date: May 10th, 2010
Website: www.lupuspatientengroep.nl, language: Dutch
Contact: info@lupuspatientengroep.nl

Group: Nationale Vereniging vor Lupus, Sclerodermie en MCTC Patienten (NVLE)
Event: To celebrate World Lupus Day, and also the thirtieth anniversary of the NVLE, the NVLE association organizes a jubilee conference for lupus patients on the 15th of May. This day is taken care of down to the last detail. Several speakers will throw light on the developments in the treatment of lupus. Also at this day, the NVLE will present the NVLE Award 2010. This is a prize for researchers and clinicians who contributed to research on or improvements in the treatment of lupus. There will be entertainment and the NVLE has held a photo contest. The ten nominated photos will be exposed during the day and the visitors can choose the winner of this contest.
Date: May 15, 2010
Website: http://www.nvle.org/home
Contract: secretaris@nvle.org

Norway

Group: Lupus Norway
Event: Lupus Conference - Lupus Norway has invited Lupus patients from all over the country to a conference in Oslo on May 8th. The conference will start at 10:00 AM and finish around 4:00 PM. Health professionals will provide the public with information about lupus, such as “Lupus in general”, “Lupus and the brain” and “Lupus and Neuropsychology”. In addition to that, one of the board members of Lupus Norway will speak of how it is to live with Lupus and how to cope the stress.
Lupus Norway plan to set up informational tables in the hospital of the capital, with the goal of distributing information about lupus and the needs of those who are suffering from lupus in Norway. We will also be calling on the media, as well as major political leaders, to serve those needs as well as to raise funds.
Date: May 8, 2010-05-06
Website: www.revmatiker.no/Plager/diagnoser/lupus
Contact: Fatima Lavoll – mailto:flavoll@online.no

Portugal

Group: The Portuguese Lupus Patients 'Association
Event: 1) - As the 10 of May is a working day we will have a meeting of several people, including patients, for the issue of a book written by one of our patients, an autobiography. 2) - That day we will send a lot of messages - thanking our doctors, other health personnel, hospitals, Government officials, scientific societies,etc, for all their care and trying to improve the knowledge of LES, and the care of our patients. 3) - At the 22 nd of May we will have a National Meeting of Patients, families and friends, for a day of convivial including little medical talks, diversion ( songs by artists, fados by patients, etc), and specially talks between patients, and also a lunch. We will remember then the World Lupus Day and all Lupus Patients.
Date: May 10-22, 2010
Website:
Contact: Rosa Maria Goncalves, associacao.lupus@clix.pt

Spain

Groups: FELUPUS and AVALUS
Event: IX Spanish Congress of Lupus
Health professionals will provide the public with information about lupus. In Galicia, we are going to make a chain of letters to explain lupus. Everyone will be asked to text 10 people, with a message to help raise awareness about lupus. Here is a copy of the poster (PDF). Date: The IX Spanish Congress of Lupus is going to be celebrated on the 7th and 8th of May in the Oficial College of Doctors of Valencia (Avenue La Plata,20). May 7th (from 4 p.m.) and May 8th (until 2 p.m.)
Website: www.felupus.org/ For information for the group in Galicia: http://www.lupusgalicia.org/Pages

Group: Asociación de Lupus de Almería (ALAL)
Event: We the Lupus Association of Almería plan to set up informational tables in the hospitals of the capital and in the main streets of the city, with the goal of distributing information about lupus and the needs of those who are suffering from lupus in Almería. We will also be calling on the media, as well as major political leaders, to serve those needs as well as to raise funds.
Date: May 10, 2010
Website: www.alal.es/
Contact: alal@alal.es

United Kingdom

Group: Lupus UK
Event: All members of LUPUS UK have received a copy of the poster. There is a new bookmark with blank butterflies for children to color. WLD stickers have also been mailed to all members for use on envelopes and parcels going through the postal system. At 12.30 p.m. on 10th May, all members are also asked to text 10 people, who do not have lupus, with the message: "Today is World Lupus Day. Please forward this message to 10 more people and help spread the message throughout the world. Thank You."
Date: May 10th, 2010
Website: www.lupusuk.org.uk/
Contact: Chris@lupusuk.org.uk

Group: St. Thomas' Lupus Trust
Event: Lupus Fest is an annual music-based charity event based in Weymouth, Dorset, England, intended to raise awareness of and research funds for the auto-immune disorder Systemic Lupus Erythmatosus and the associated blood-clotting disorder Antiphospholipid or Hughes Syndrome.This year's event takes place on Friday 8th, Saturday 9th and Sunday 10th October and features ore than 25 acts in 2 venues over 3 days including the first performance in 5 years by The Lucky Bishops; the 2nd performance in 14 years by Polygenes (featuring Chas Dickie ex Van Der Graaf Generator and Robbie McIntosh ex Pretenders & Paul McCartney); Bebe & Paolo; Graham Dee; Fast Stark Horrendous; The Andy Grant Trio; Darrell Mitchell & The Occasional Orchestra; Garfields Birthday; Jumping Jimmy Thunder; Kipper; Ian Sedwell & Matt Benjamin; Damian Clarke; Jenny Stanley; Marc Block and many many more.
Date: October 8, 9, 10
Website: http://www.facebook.com/LupusFest2010 or http://www.myspace.com/lupusfest
Contact: lupusfest@tiscali.co.uk

Group: Rokeby School, Kingston upon Thames, Surrey, England
Event: Walking for Lucy and Lupus - Nine year old Billy O'Donnell, and many of his classmates from Rokeby School, Kingston upon Thames, Surrey, England, will be "Walking for Lucy and Lupus" raising funds and awareness in honour of Billy's aunt, Lucy Vodden, who died on September 22nd 2009 aged 46 from Lupus. So far Billy has raised over £150.00 (over 200 USD). (Editor's Note: Lucy Vodden was the childhood friend of Julian Lennon. Julian's drawing at age five of his friend Lucy was the inspiration for the Beatles' hit song, "Lucy in the Sky with Diamonds.")
UPDATE: On World Lupus Day, the boys from year 4 at Rokeby school walked for “Lucy and Lupus” from their school in George Road Kingston, to Richmond Park. Carrying purple balloons and proudly wearing their badges and wristbands, we sang and laughed on the 1.5 mile route from school. On arrival in the park the boys set up a football pitch and we picnicked on sandwiches, biscuits and butterly fairy cakes. We set some balloons off to say hello to Lucy and to remember everyone who had lost their brave battle against this disease. Billy was so proud that his friends came with his to honour his beloved Auntie, who he misses so much. The boys all paid to come on the walk, and with generous donations from family and friends we’ve raised nearly £300.
Photos of the event: Photo 1 - Billy and classmates walking, Photo 2 - Participants at the football pitch

Date: May 10, 2010
Website: http://www.rokebyschool.co.uk/

United Arab Emirates

Group: Mafraq Hospital is part of the SEHA HealthSystem
Event: Mafraq Hospital held an education event to coincide with World Lupus Day. This is the first time the event has been held in Abu Dhabi with the aim of increasing awareness about Lupus. Mafraq Hospital's first event to mark World Lupus Day was organized by the Rheumatology team at Mafraq Hospital. During the vent leaflets with valuable information about Lupus in Arabic and English were prepared by the Rheumatology team and distributed to the public. Doctors and staff were on hand to welcome guests. Barney and his friends paid a surprise visit to the younger members of the audience and face painters kept many of the children sitting quietly whilst being transformed into Spiderman or a butterfly.
Date: May 10, 2010
Website: http://www.seha.ae/Pages/Intro.aspx

United States

Group: Lupus Foundation of America -- National Office
Event: World Lupus Day is just one of the featured events in a month-long observance of Lupus Awareness Month in the United States. As part of the observance, the LFA is engaging constituents through its social networking sites, including Facebook, MySpace, Twitter and the LFA Blog to secure commitments by individuals and organizations to do one thing to raise awareness of lupus. The LFA has developed two eCards and is urging people with lupus to Send an ecard to 10 friends on May 10. We're also are asking people worldwide to make a commitment to Band Together for Lupus by signing an online petition that already has exceeed its original goal of 5,000 signatures, which now has been doubled to 10,000. Likely that goal will be increased again as momentum continues to build to engage people from all walks of life to help raise awareness of lupus. The LFA will conduct The Butterfly Gala, Seventh Annual National Awards Dinner on May 12. Musicians Julian Lennon and James Scott Cook will perform, "LUCY," in memory of Lucy Vodden, Julian's childhood friend who passed away from lupus last year. Julian's drawing of Lucy, made when he was only five years old, inspired Julian's father John to co-write one of The Beatle's most memorable songs, "Lucy in the Sky with Diamonds." Proceeds from the sale of "LUCY" are being donated to the LFA and St. Thomas's Lupus Trust to support lupus research. Date: May 10th, 2010
Website: www.lupus.org
Contact: webmaster@lupus.org

Texas

Group: Lupus Foundation of America, North Texas Chapter
Event: Media Outreach - Local TV station KTVT, Channel 11 (CBS) will broadcast a story about World Lupus Day and highlight activities and services of the local LFA Chapter.
Date: May 10, 2010
Website: www.lupus-northtexas.org
Contact: Tessie Holloway, tessie@lupus-northtexas.org