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Thank you, Leo Messi Bulletin no.9 July 2009 Photography by Jordi Cotrina ©
Thank you,Leo Messi
Bu
lle
tin
no.9
July 2009
Photography by Jordi Cotrina ©
July 2009
2
Bulletin no.9July 2009
Director: Mercè Bellavista.
Coordination: Eduardo Brignani, Toni Miedes,
Anna Solana and Lluïsa Vidal.
Collaborators: Mercedes Aldecoa, Marta Bellavista,
Albert Bisbe, Carmina Campillo, Jordi Cotrina, Xavi Días,
Carles Domènech, Francisco Farreres, Rafael Jiménez,
Teresa León, Família Majó-Torrent, Yoyes Lamarca,
Marta Mariñosa, Arturo Romero and Raquel Serra.
Published by: Associació Catalana Síndrome X Fràgil.
English edition: Marc Isamat.
Formating and design: Fargrup.
Plaça del Nord, 14
(Col·legi La Salle Gràcia)
08024 Barcelona
e-mail: [email protected]
www.xfragil.cat
(+34) 93 217 09 39
Day Activity Hour Place
October 24th Sex-education workshop for parents 10h to 14h Barcelona
October 24th Sex-education workshop for youngsters 16h to 18h Barcelona
November 21th FXS informative Conference 10h to 14h Girona
Programme July - December 2009
For other activities or more information please contact the association
SUMARY
Programme .......................................................................... 2
Editorial .................................................................. 3
“I'm just waiting for the T-shirt” ................................ 4
The Associations' Facebook ................................... 5
The families will never forget you ........................... 8
“Thanks and encouragement to families” .................. 8
A special type of happiness .................................... 9
A small gesture ................................................... 9
Fathers only fathers ................................................ 9
The butterfly that identifies us ................................. 10
An inclusive schooling law ...................................... 10
Workshops ............................................................. 11
FXTA Syndrome ..................................................... 12
Thank you for the opportunity ................................. 12
Artur Mas and FXS ................................................. 12
Get together luncheon 2009 .................................... 13
The third sector ...................................................... 13
A meeting with Dr. Argimón .................................... 13
Special Occupational Centres ................................. 13
The fundraising catwalk ......................................... 14
CAF Gestión: “We all count, we all paint” ................ 15
Rare Diseases Day ................................................. 15
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Whith de support:
Editorial
A LIFE OF EFFORT
Our association does not work on a seasonal mode: the workof the families is a daily thing, but if we were to talk about theyears 2008-2009 in sport terms, we could say this has beenone of the most significant years for fragile X. The step forwardthat we have achieved in rising public awareness of FXS hasgone hand in hand with the success Leo Messi, the Argentineanfootball magician has harvested, with the Barcelona footballclub T-shirt. Leo Messi has been the sponsor of the solidarity book of theseason that has just gone by and that has enabled our associationto raise funds for our task: increase public awareness, work forprevention and promote research. But above all, Leo Messi'sgesture, dedicating to us the goals he scored at the Bernabeustadium in Madrid in the most seen match of the league, hashelped us tremendously in approaching FXS to everyone andhas provided great recognition to FXS and Fragile X familiesall over the world. From the Catalan FXS Association we can only, once more,express our gratitude to Leo Messi and his family for their great
help. And we want to stress that we are more than willing tocollaborate with Leo Messi's Foundation. A season full of rewardshas just ended, but our association has worked for 14 yearsand we would have achieved very little without everyone's dailyeffort, the work of all families, the persevering fragile X peopleand the collaborations at all levels. If we carry on talking from a sports viewpoint, of the coming2009-2010 season, it must be totally clear that the associationwill continue to work day by day, that our aim is precisely, thatday to day work. Having said that, we are all aware that 2009 will conclude withthe TV-3 Marathon fund raising programme dedicated to rarediseases, and we will make every effort to be in there too.
Mercè BellavistaPresident of the
Catalan Fragile X Association
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July 2009
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“I'm just waiting for the T-shirt”
This is what Rodrigo Messi told us that his brother Leo hadsaid just before coming to see us. No doubt, Mercè's requestduring the closing ceremony of the solidarity book kept echoinginside Leo's head. We met at the bar of some central hotel in Barcelona; it wasbound to be and exciting encounter, full of anxiety and hope.All three of us were trying to look calm. But when Rodrigopronounced this sentence, Mercè's nervous hands went straightinto the bag where she kept the T-shirts. Albert, who hadcrossed half the city looking for the right size and a place tohave the T-shirt printed, was turning on his chair making greatefforts to keep himself quiet and under control instead ofrushing out to tell everyone. I was sort of hoping he wouldtake the T-shirt and hand it over to his brother. We saidgoodbye. Rodrigo Messi? He is a convivial person, perhapsa little shy. Is this a defect, or perhaps, more appropriately, avirtue running in the family? This - I thought- has been again a fortunate encounter. Onemore on the long list of fortunate encounters with sensible andgenerous people. Between Ketty and Núria, Pol's mother,
between them and the other 39 journalists in solidarity, andthen with Mercè, and then between them all and Leo, andthen... We, all three, left the hotel bar. We looked at eachother and thought: “Now we must cross our fingers and wait”.Now all we had to wait for was a goal. And he did it, and thenanother one! all the restrained emotion was set loose, just likethe bangers exploded in thousands of homes, at the bar doors,in our hearts. Then it was bliss, mixed even with some tears.To celebrate the goals, Leo pulled up his T-shirt and pointedwith his finger that he was dedicating the goal to Fragile X, agesture seen by thousands of TV viewers, of both teams, from allcontinents, and most of them were asking themselves what onearth could fragile X syndrome be? Thousands of people knewthen that we are here, that we exist and now they know us.All together this was possible thanks to a generous and sensiblegesture, and to a rather daring challenge. Thank you Leo, for making our happy butterfly fly, with yourgoals, through the televisions all over the world.
Eduardo Brignani
Photography by Jordi Cotrina ©
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The Associations' Facebook
The first time I went into Facebook I had no idea what thissocial network could mean. Soon after having opened mypersonal page, I realized that other pages and groups couldbe created. The idea of having a FXS Facebook page cameto mind, as I have an affected cousin, the son of my auntMercè Bellavista, president of the Catalan Association.After creating the Catalan Association's page, I invited allmy acquaintances to join in and I downloaded all photos ofactivities and events that I had collected till then: frommeetings in Washington, Chicago, Atlanta, the visit of thelittle ones to Barcelona FC, fundraising cat walks... Socialnetworks in the net, with facebook in particular, werebecoming so popular that I considered this was just anotherway to have this disease be known to everyone, a way toattract solidarity to us with such a simple approach asbecoming a “friend”.
Until last May 2nd we had 400 fans, but since then, afterthe football league's magic day, lots of people becamecurious about the words that were printed on Leo Messi'sT-shirt that went around the world.
The Argentinean footballer celebrated both goals againstReal Madrid showing the FXS T-shirt with our butterfly and
this fact only made that in a couple of weeks we had over3000 fans. Now there are more than 4000 and we hope wewill continue to find support.
Everyone visiting our Association's Facebook page willnotice that we have a photo album with all the press extractsthat have been released, videos with interviews to MercèBellavista in different media, etc.
We also show the photos downloaded by the fans, like theones from the Penya blaugrana in Montornès del Vallès,who took the Association banner to the final match of theChampions' league when Leo's Barça beat Rome.
Now we get emails from all over the globe offering supportor just wanting information or to share an experience withan affected relative. Mercè Bellavista, our association'spresident, is in charge of all these people. I deal withupdating all that is being done and everything that wereceive. We could have never imagined that such a simplegesture by Leo Messi wolud achieved so much in so littletime. In this way we hope that social awareness of FXS willcontinue to grow.
Marta Bellavistahttp://www.facebook.com/
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July 2009
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Last march 19th, at the Caixa Penedes Barcelonaheadquarters, our association received a cheque withthe funds raised from the book “29 sport stories with acause”. Leo Messi sponsored the book published thanksto the initiative of 39 sport journalists, and handed overto us 82.022 €. The general secretary for sports, Anna Pruna; Thepresident of the savings bank Caixa Penedès, JosepColomer; The general manager of El Corte Inglés, AngelMontesinos, and the 39 sports journalists hosted the event. From the association we want to stress that it was duringthis event that our president, Mercè Bellavista, askedLeo Messi if he could dedicate a goal to us. The footballstar accepted our proposal, and everyone has felt that,
apart from being a wonderful sportsman, Leo is animmensely caring man, as immense as the impact of hisgesture.The donation of the funds raised is the closing step of afantastic experience: knowing that the journalists wouldwrite a book and give us the benefits, that Caixa Penedeswas paying for its publication, that El Corte Inglés wouldpublicise it and sell it and that 18 other companies wouldalso collaborate with this initiative. Once more, thanksfor all the solidarity and for helping us make FXS knownto everyone.
Rafael Jiménez--------------------------------------------------------------------------------
The families will never forget you
Words of gratitude and support like this have been writtenin letters received at the association in response to the mailingof the book 39 sport stories with a cause. Some are as relevantas that from Queen Sofia of Spain, the president of Spain,José Luís Rodríguez Zapatero, and the president of the CatalanAutonomous government, José Montilla. We have sent over one hundred copies of the book from ourassociation, to have them fly around and tell everyone that weexist. We thank the journalists, Leo Messi's gesture. These
are little steps of great humane value, of great social impactthat will help us claim back, particularly from institutions, morecommitment and work for patients and their families.
Anna Solana
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“Thanks and encouragement to families”
July 2009
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It is a pleasure to collaborate with group initiatives with thesole aim of showing solidarity. The last one we, the sportsjournalists in Barcelona, have done has meant to me a veryspecial type of happiness and a great satisfaction to see howthe sport stars act with the kids. Indirectly, because the son of some friends is affected byFXS, I have become involved, more than ever, with muchmore care, to find a distinguished star, who had stories aboutkids: when I told Joan Laporta that a book was destined to avery special association, with great push - all merit goes tothe parents that make up the group, a great group - he quicklysummoned me to his office at the Camp Nou stadium. Thepresident talked to me about this disablity, he asked me a fewquestions... and he asked me to pay attention. Joan Laporta, who is totally devoted to the little ones andwho finds time where he hasn't to do all sorts of things withhis kids, confided in me that in the course of some trips hehas cried because of his lack of power at discovering lots ofchildren that live in a world of sheer sadness and that hisheartbeat went faster when they smiled. With the Barça F.C. he has become an ambassador ofsolidarity, and this year, for instance, he has visited zones ofIndia, Africa, and some of the most remote corners of SouthAmerica... places where the football club he presides from2003 has set up training centres, where kids are schooled,play football, have medical attention, food and drinkable water.With the collaboration of UNICEF, Barça, by the hand of JoanLaporta, has given example to the rest of the Footballers' worldthat all funds destined to this cause are still not enough. Hesaid it in the middle of a conversation. Interested in the other stories that would eventually completethe book, Laporta greeted Leo's sponsoring, the best footballernow, a youngster from Rosario who is able to surprise everyonein and outside the stadium. To my friend David, son of Arturo and Xelo, Leo is out of thisworld, every time he sees him on TV, he wants me to sit nextto him on the sofa and enjoy his jumps and summersaults,long minutes... that he enjoys quietly, when he is happy.He was as happy as everyone that night on May, 2nd at theBernabeu Stadium, when after scoring a goal against Casillas,Leo Messi dedicated it to FXS. President Laporta was right, that pibe had a surprise in storefor us, for grown ups and kids alike, for our sons and daughters,dads and mums. You, all of you, also deserve a standing ovation: you are thedaily living proof of why “someone” has sent us to this world.
Xavi DiazTVE (Spain's National TV) journalist
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A special type of happiness
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It has been a pleasure to collaborate with all of you. It is easyto work with Mercè, Laura and the people from the association.It fills us with pride that all the work behind the book “39 sportstories with a cause” is represented in the cheque that LeoMessi handed over to the association. It is just money, butmoney that will be put to use to lower the needs of kids andtheir families that we feel are very close to us. When Leo Messi showed the public his T-shirt in the BernabeuStadium, I was not totally conscious of the impact it was goingto have. A small gesture can bring about enormous gains. Theentire world knew that some kids, parents and an association,and that loads of work and suffering, existed. Just a smallgesture... and this is what our group of sports journalistsintended, a small gesture with enough impact on the wellbeingof people who need it. Only this, a small gesture.
Carles DomènechJournalist Catalunya Ràdio
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A small gesture
Fathers only fathers
On June 18th, a few fathers from the association gottogether to share feelings, experiences and anxieties. Oncemore, Eduardo Brignani, acted as master of ceremoniesand coordinated the encounter to make sure that everyoneleft satisfied. We also thank Jose Luis for making the meeting possibleat the premises of Hotel Gran Via in Barcelona.
Arturo Romero
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July 2009
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THE BUTTERFLY THAT IDENTIFIES US
The Association is grateful once more to Yoyes Lamarca who managed 13 yearsago to convince the graphic designer Joana Catot to design our logo, the butterflythat identifies us, in a disinterested and generous manner. The Associationregistered the logo in order to commercialize the T-shirt that Leo Messi waswearing. Joana Catot said to Yoyes that this logo is the work that has mostsatisfied her and which she is most proud of in all her career as a designer.According to Yoyes, in 1996 the association had no logo to identify FXS andthen some graphic design students were approached to have them work on theletter X, as other associations in the USA had been doing. At that time, throughan acquaintance of Joana Catot the association contacted her and asked forhelp, disinterested help.
First Joana asked for information on Fragile X Syndrome and on the kids in ourassociation, and she quickly thought that we had to identify FXS with a livingthing. A little after she told us that the butterfly was our best representation. Sheshowed us two butterflies and a FXS boy chose the one he liked the most. Sincethen the burgundy butterfly is our symbol.
A few days before Christmas 1996 we had headed letter paper, cards, envelopesand we had to decide on the formatting of an informative triptych brochure aboutFXS with our new logo. In this phase Elena Tremoleda participated very actively,she was then a graphic design student of Joana, whom I knew. The truth is,between the two of them, they came up with extremely good work.
Yoyes Lamarca
The citizen's committee for an inclusive schooling system inCatalonia organized a gathering of people before the GeneralitatPalace (Catalan government) on April 19th, to request that thefuture education law in Catalonia is truly inclusive. We requestthat the law recognises the right to non-discrimination forreasons of disabilities.
The aim is to prevent segregation and that the law bets foreradication - in a gradual manner - of the current double schoolnetwork (ordinary and special schooling of children) and thatit defends a school model which would consider thetransformation of special education centres into support centresat ordinary schools or to other options that would enable thesuccess of inclusion with the currently available resources.We must bear in mind that for as long as this double schoolingnetwork exists, the necessary changes in education (resourcesand strategies) for an inclusive school system will not takeplace, and we will be therefore signing the failure of the principleof inclusion.
We must remember the importance of schooling inclusionfor our aim of an inclusive society. Inclusive schooling is arecognised right in diverse law systems and guidelines, andalso for the UN through the disabled person right convention,which Spain has signed and ratified. Remember that aninclusive school system is a model of positive schooling anda benefit to everyone, even to pupils with a severe andpermanent disability. We also want to remind you that Cataloniais at the first position in school exclusion for the whole of Spain.With this gathering we wanted to request the political partiesand the Catalan President their support so that in the not sofar future Catalonia has an inclusive Schooling Law of highquality for everyone..
Carmina Campillo
An inclusive schooling law
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The Girona workshop
Last April 25th a workshop titled “How to promote the child'sautonomy” was held in Girona with our Psychologist EduardoBrignani, and we welcomed the new members Albert and Asunand their son Joel, and Marisa with her son Alex.I would like to take this opportunity to thank all the others whoaccompanied Eduardo: Katy, Manel, Zaida, Josep LLuis, Cruzand Pedro. I want you to know that Eduardo gave us plenty of work andwe learnt a lot, we played and went through all sorts ofmoments, but with the aim of saying what we thought.It is just incredible how much you can learn: to share, to listen,to express feelings, and value the little things apparently soinsignificant but so or even more important than the others.This is all positive and good because we can explain ourselves.There are more of us every time and the doors to our heartsare open to all.
Paco, Dolors, Cristian and Paula
Workshops
Fathers, in the Girona workshop
The Tarragona workshop
This is the second time my wife, Enriqueta and I haveparticipated in the workshop “Strategies to develop autonomyon our children”, that the association organised on June 20th.This is a very important experience for us. We learn a lot fromthe comments of parents with grown-up sons because theyhave already gone through what we are currently going throughwith Samuel. In addition, the workshop is useful for analysing and improvingour attitude before our child's education, who grows everyday even if it goes almost unnoticed to our eyes. The meetinghas also enabled us to realise that overprotecting Samuel maynot be necessarily good for him. From Tarragona we thank our association for their visit andits offering of this opportunity to participate in the workshop..
Francisco Farreres XimenisFathers, in the Tarragona workshop
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Last May 28th, our association celebrated, with a largerturn-out, the 13th Organisational General Meeting, wherethe 2008 activities report, financial status, and suggestionsfor 2009 activities were approved.
Remember that all associate members are welcome atthe meeting and that the aim is to have all future activitiesbe known to everyone, the suggestions and proposalsbrought forward by everyone.
General Meeting
Julio 2009
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To have the opportunity to encounter and exchange experienceswith professionals, with colleagues dedicated to the same jobyou are doing, is invaluable. To have the opportunity to attend the most recognised scientificsymposia around the world in the field of psychology applied todisability is also very important for someone who is been devotedto it for years. Besides the scientific recycling produced by one such meeting,
this is also a time to stop, reflect and look at the way walked,analyse it and come up with new challenges. Once again, I amvery grateful for the opportunity that the Catalan Association ofFragile X Syndrome has given me, for participating in the VIIScientific Symposium on Research on People with Disabilitiesheld in Salamanca from the 26th to the 29th of March earlierthis year.
Eduardo Brignani
Thank you for the opportunity
Artur Mas and FXS
On May 6th 2009, Artur Mas, president of Convergència i Unió,got together with a delegation form the association. Artur Maswas in favour of creating a reference health centre to attend
and care for FXS, and he collected our suggestions foreducation, research, employment and health services.
Rafael Jiménez, Mercè Bellavista, Artur Mas and Albert Alsina
Our “home” geneticist Dr. Montse Milà, organized a scientificsession on FXTAS at the Hospital Clinic of Barcelona, byinviting 6 leaders in the field, two from the Nederland andSwitzerland. Dr. Javier Pagonabarraga from Hospital de SantPau in Barcelona, also participated and presented his work incollaboration with the Biochemistry Department at the HospitalClinic on the nature of this type of tremor/ataxia.
The association collaborated in one lunch session to proofthat we are involved in research also in benefit of those thatare premutated or fully mutated at the FMR1 gene and thatcan manifest clinical symptoms in the lasts years of life.
Anna Solana
FXTA Syndrome
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On May 31st, as in previous years, the family party tookplace. In last years it had been impossible for us go for lunchso this year we encountered new faces. The majority withrather small children, a good indicator that diagnosis comesnow earlier than a few years ago.
The day went by fast because sharing experiences andmemories with people in your same situation is highly gratifyingand beneficial to all, whether they are old friends from the startof the association or people you have just met.
Teresa León and family
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Get together luncheon 2009
Congratulations to the organizers and to all families!
Our association was invited to participate in the 2nd Congresson the Third Social Sector in Catalonia, celebrated at La Fargade L'Hospitalet, last March. This sector is very much alive andcurrently groups nearly 7.500 associations, with 250.000volunteers and 100.000 workers that provide care andassistance to over one million people with all sorts of servicesand caring activities. Inside the Associations round table, theCatalan FXS Association explained how we work to giveefficient support to families on the most relevantaspects,present and future, of those affected by FXS. During thefollowing debate, it was stressed that only groups andassociations who work sensibly and professionally have afuture, this is how we try and do things in associations likeours.
Anna Solana
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The third sector
Last April 15th a delegation from our association met withdoctor Josep Maria Argimón, Head of the Evaluation servicesin the Catalan Public Health System. Dr. Argimón statedthat he will study the requests that we brought forward toimprove diagnosis. With respect to the possibility of creatingof a reference centre for the care of FXS patients andresearch on FXS, Dr. Argimón claimed that the currenthealth network is designed so that if the paediatricianobserves any problem, the patient is sent directly to aneurologist.
Rafael Jiménez
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A meeting with Dr. Argimón
The Department of employment of the Catalan AutonomousGovernment has taken up, as from last June this year, themanagement of special occupational centres which wheremanaged by the department of social action and citizenshipunitl now. These centres are productive companies, and assuch, their employees, mostly affected by some disability havestable jobs and an income. Currently, Catalonia has 216 specialoccupational centres employing some 11.000 workers, 60%of whom are men and 40% women. They are mainly dedicated
to services such as gardening or industrial handling tasks.From the association we wish that the new departmental moveimproves the quality of the occupations and the workingconditions of the employees so that these companies approachnear normalization and become comparable to ordinary firms.
Anna Solana
Special Occupational Centres
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July 2009
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On February 8th earlier this year, we had the chance toexperience, live, the fundraising catwalk “We all count and weall paint!”. Mallol had suddenly a “mummy-clamping” attackand we stayed behind in the dressing room. We had planneda wonderful afternoon with no kids. But we all know, you can'tplease everybody.
It was a great experience for us, to see all those kids goingup and down the catwalk, it made the overall excitement verycontagious. There were moments of chaos, tears, laughs,running around... Right in there we found ourselves enjoyinga great afternoon, better than anything we could have planned.
Today our children still remember laughing the instructionsand orders from the organizer, the “Captpaint” as he had madehimself known to the audience.
The event was very well organized and we must value, in thissense, that the main stars of the show were the children, forthem it was all a game and they were there just to have fun.
We would be very happy to repeat the experience next year. Our thanks to everyone who made this catwalk possible.
Majó i Torrent family
The fundraising catwalk
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CAF Gestión has been organizing a fundraising “We all count,we all paint” catwalk ever since 2000. The idea sparkedbecause our company works for Foundations and non-profitorganisations and we wanted an act where the little ones werethe real stars.
The main aim is raising social awareness of these non-profitorganisations and of course, to raise funds for their projects,We, at CAF Gestión, believe that it is important to join effortswith other organisations whose aims are similar, in this casewith children affected by different disabilities or diseases. Thisway the projection is greater and the impact larger at all levels.The first year two organisations participated. 15 kids went upand down the catwalk and some 150 people attended theevent. Now, there are 6 organisations present, with 80 childrenand a thousand attendants.
The catwalk would be impossible without our sponsorFundación Renta, without the collaboration of companies thathave provided the spaces freely for the event, without the workof professionals who have disinterestedly offered their work,without the fashion firms who provide the clothes, without thevolunteers and many others that have trusted and continue totrust this project.
For nine years our objectives have been achieved, becausefor one day, the kids have been the stars and have forgotten their problems and enjoyed a festive environment with theirparents, brothers and sisters, and friends. In addition to, onceagain, the social impact that all these organisations have ontheir own.
Mercedes Aldecoa
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CAF Gestión: “We all count, we all paint”
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The day for Rare Diseases was celebrated for the first timelast February 28th, around the world. In Catalonia, the eventbecame a demonstration in Barcelona. We all expected a largerturn out from associate members. But despite this, the encounterwas rather positive because we learnt that there were differentrare diseases and other syndromes totally unknown to us. Alltheses pathologies deserve help, no matter how little, and a
great deal of support for the affected people and their families,who also suffer the consequences of these diseases. As thesong goes: “we must keep on fighting, don't say no! As we allknow it is no good to suffer, but it is good to have suffered”.
Raquel Serra and Albert Bisbe
Rare Diseases Day
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