Archivi tag: LOLLY MACK

Le Cure Girls Lolly e Sabrina in Missione per Spinal Research

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LOLLY & SABRINA ON MISSION

Lolly vive a Londra,  Sabrina è Brasiliana. Le nostre 2 Cure Girls si incontreranno in Brasile per fare alcune riprese, sensibilizzare e  raccogliere fondi per diffondere il messaggio a favore della ricerca di una cura per le lesioni spinali croniche.

Dopo una serata passata con gli amici, Lolly ha subito un paradossale incidente che l’ha resa tetraplegica. Sabrina invece, stava facendo “surf in aria”  quando qualcosa è andato terribilmente storto e  anche lei purtroppo è rimasta paralizzata.

Lolly e Sabrina sono molto simili, non solo perché hanno lo stesso livello di lesione C4 – C5, ma anche nello spirito. Hanno famiglie amorevoli, molti amici e amano divertirsi. Inoltre si sforzano ogni giorno per sostenere la ricerca di una cura affinché possano recuperare la loro indipendenza.

Al momento in Brasile non c’è un ente di beneficenza che raccoglie fondi per la ricerca di una Cura per le lesioni del midollo spinale, così hanno entrambe scelto di raccogliere fondi per Spinal Research UK.

Spinal Research è un ente leader nella raccolta fondi per finanziare ricerca medica volta a sviluppare terapie efficaci per la cura della paralisi causata da lesioni spinali.

Ogni anno, 1.000 persone nel Regno Unito e in Irlanda diventano paralizzate a seguito di una lesione al midollo spinale. Spinal Research raccoglie fondi per finanziare la ricerca di base e la ricerca clinica, grazie alla quale si è sul punto di iniziare ad applicare terapie per ripristinare il movimento e trasformare la vita delle persone paralizzate.

AIUTACI. Donare è semplice, veloce e totalmente sicuro.  Clicca qui. I tuoi dati sono al sicuro con JustGiving – non saranno mai venduti e non ti saranno inviate e-mail indesiderate. Una volta donati, i soldi andranno direttamente alla fondazione. Quindi questo è il modo più efficace per donare, risparmiando tempo e riducendo i costi per la fondazione.

Cure Girls

CURE GIRL’S Lolly and Sabrina’s Brazilian Mission for Spinal Research

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LOLLY & SABRINA ON MISSION Cure Girl Lolly is from the UK and Cure Girl Sabrina is from Brazil. The girls will be getting together in Brazil to do some filming, fundraising and raising awareness.. spreading the CURE message.

After a night out with friends a freak incident occurred which left Lolly paralysed. Sabrina was on a simulated ‘air surf’ which went terribly wrong and left her paralysed.

Lolly and Sabrina are very similar, not only in having the same level SCI C4/5 but also in SPIRIT. They have amazing family and friends and they love to have fun and love life. They also strive everyday to support research and cure so they can regain their independence.

At the moment in Brazil there isn’t a charity which raises funds for medical research into spinal cord injured people so they have both chosen to raise money for SPINAL RESEARCH UK.

Spinal Research is the UK’s leading charity funding medical research around the world to develop reliable treatments for paralysis caused by a broken back or neck.

Every year, 1,000 people in the UK and Ireland are paralysed following an injury to their spinal cord. Spinal Research raises money to fund research into clinical treatments as well as vital basic science research. Thanks to such pioneering research, paralysis can now be treated and we stand on the brink of applying therapies that will restore movement and feeling and transform the lives of paralysed people.

HELP US!  Click here to donate. Donating is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Cure Girls

The useless kick off is an obstacle for the real cure!

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On June 12th 2014, a paraplegic gave the first kick in the World Cup in Brazil using an Iron Man style bodysuit controlled by his brain.  ( video )

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For people not familiar with paralysis caused by spinal cord injury, this robotic suit also called an ‘exoskeleton’. It may look very useful, but unfortunately that is not the case. I have nothing against robotics as they can be a useful complementary approach, but the attention and funding they get seems to be exaggerated when considering its potential results especially when compared to the potential of regenerative therapies. These devices don’t make us walk, they just move our legs! At the same time they don’t do anything to recover important functions such as breathing, hand functions, sensation, bowel, bladder and sexual functions etc…
What exoskeletons actually do is divert attention and money away from what could really give us back what we need to live an independent life: medical research directed to find a cure for chronic spinal cord injury.
Like me, many people living with paralysis are very worried by the fact that there seems to be  growing support to develop exoskeletons as a solution for paralysis and the main argument in support of that is that a real cure is a long way off.
This concern grows when we hear that the Brazilian government gave $14 million in the last two years to support this project. http://www.iflscience.com/technology/paraplegic-ironman-suit-will-take-first-kick-2014-world-cup
I wonder: what progress toward a cure could have happened if in the past two years $14 million had been given to a research group working to find a cure for chronic spinal cord injury?Copia di Robotic legs
Unfortunately we will never know that, but we know for sure that exoskeletons no matter how much they will be improved will keep us paralyzed. This is why I would far rather see resources devoted to a regenerative intervention that would address the full breadth of the ravages of paralysis than the prospect that maybe one day, 5 or 10 years from now, someone can strap a shower cap full of electrodes to my head so that I can “walk” myself into a wall because of a technical problem that sooner or later any device will have.
I hope that in the coming years researchers working to find a cure will have at least the same level of funding as the ones working on exoskeletons;  it would be logical to put much more money toward a cure since a cure has much better outcome than the best possible exoskeleton. Will logic prevail?
It’s time people wake up and support a cure not robots!

Cure Girl Loredana

Un inutile calcio d’inizio che “ostacola” la vera cura!

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Giovedì 12 giugno 2014, anche se in pochi se ne sono accorti, un paraplegico ha dato il “calcio d’inizio” dei Mondiali di Calcio del Brasile, utilizzando una particolare impalcatura robotica comunemente definita “esoscheletro”. clicca qui per vedere il video

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Per chi non conosce realmente la paralisi da lesione spinale questi esoscheletri potrebbero sembrare qualcosa di molto utile, ma purtroppo non è così. Non ho nulla contro la robotica in sé, penso che in alcuni casi possa essere un approccio complementare, ma nel nostro caso, l’attenzione e i finanziamenti dedicatogli sembrano davvero essere esagerati se si considerano le potenzialità dei robot, rispetto a quelle delle terapie rigenerative. Questi “aggeggi” infatti, non ci fanno camminare, ci muovono solo le gambe! Ma soprattutto non ci permettono di riconquistare funzioni perdute importantissime come la respirazione, il reale uso delle mani, della vescica e dell’intestino, la sensibilità e le funzioni sessuali. Di fatto però hanno la capacità di spostare fondi e attenzione dall’unica cosa che potrebbe davvero restituirci la nostra vera vita autonoma e indipendente: la ricerca medica di una cura. Sono molte le persone mielolese come me che trovano inquietante che si spinga verso la robotica come soluzione alla paralisi, facendo leva principalmente sul fatto che ci vorrà ancora parecchia strada prima di giungere ad cura biologica . Questa preoccupazione cresce se pensate che il solo governo Brasiliano ha destinato a questa ricerca circa 14 milioni di dollari negli ultimi 2 anni. (Clicca qui per leggere l’articolo) Mi chiedo:” Cosa sarebbe successo invece se questa cifra fosse stata destinata ad un bravo ricercatore che si occupa di cercare terapie per promuovere la rigenerazione nelle lesioni spinali croniche?” esoscheletri vs curaPurtroppo non lo sapremo mai, quello che è certo è che questo tipo di tecnologia per quanto possa essere migliorata, ci lascerà comunque paralizzati, per questo io avrei di gran lunga preferito vedere queste risorse destinate a progetti di ricerca medica rigenerativa atti ad affrontare l’intera gamma delle devastanti conseguenze dovute alla paralisi invece che ad un costoso sistema robotico. Mi piacerebbe davvero infatti, che per gli anni a venire i ricercatori che stanno cercando una cura, potessero avere quantomeno gli stessi fondi che oggi vengono destinati a questi “aggeggi”, anche se in tutta sincerità preferirei di gran lunga che ne ottenessero molti di più visto che è logico pensare che per noi una CURA è molto meglio di un esoscheletro!! Svegliamoci!!! Supportiamo una vera cura per la paralisi non dei Robot! E voi, cosa ne pensate?

Cure Girl Loredana

Support the real cure – not a robot!

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The Longitude Prize 2014 is a challenge with a £10 million prize fund to help solve one of the greatest issues of our time. It is being run and developed by Nesta, with the Technology Strategy Board as launch funding partner.

How does it work?

Of the six challenges shortlisted by the Longitude Committee, they want you to vote for the one you think should become the focus of Longitude Prize 2014. One of the challenges is paralysis.

Great news, you would think, but unfortunately this prize could potentially be awarded to whom will develop new compensatory devices such as a wearable robotic suit instead of to a scientist that will find a cure.

Organisers of the Longitude Prize have suggested (see BBC documentary from minute 13.30) that what we need is not regenerative medicine as the cure is a long way off, but instead devices that help us to live with our paralysis! I hope to explain to you that these robotic interventions can’t even do that. It is very unfortunate but it would seem as though curing spinal cord injury has been forgotten in favour of gadgets that do not restore function.

The Cure Girls invite you to join us in saying that we want regenerative therapies, not robots! We disagree with robotic wearable suits and here’s why:

  • they have no impact on bladder/bowel/sexual function or breathing ability, leaving us to suffer with infections and accidents
  • they have no impact on sensation or neuropathic pain leaving us to suffer with pain and pain medications
  • they have no impact on arm or hand function which is a huge problem for tetraplegics
  • they require assistance to use therefore do not increase independence
  • they are bulky, slow and impractical for everyday use not to mention expensive
  • and finally they cannot be used by high level tetraplegics as trunk stability is required

But most importantly, these compensatory devices are being labelled as a cure – as devices which solve all of our problems. I hope this blog has explained to you that these compensatory devices solve NONE of our problems. If paralysis is chosen as the Longitude Prize, valuable research funds will be diverted to further development of machines that do nothing to restore function.

Join the Cure Girls in saying NO! to robotics and YES! to regenerative medicine

Just go on the FB page of the Longitude Prize and post your comment or on Twitter @longitude_prize.

 

Supportiamo una Cura reale, non dei robot!

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Il Longitude Prize 2014  è una competizione con 10 milioni di sterline in premio per aiutare a risolvere uno dei più grandi problemi del nostro tempo.  Gestito e sviluppato da Nesta, con the Technology Strategy Board come partner.

Come Funziona?

Il Longitude Prize offre la possibilità di scegliere tramite una votazione tra sei grandi sfide, una di queste è la paralisi.

Una grande notizia, pensereste, ma sfortunatamente questo premio potrebbe essere vinto per costruire dei dispositivi compensativi, come dei robot da indossare.

Gli organizzatori del Longitude Prize affermano che ciò di cui abbiamo bisogno non è la medicina rigenerativa poiché è ancora molto lontana, (vedasi il  BBC documentary dal 13.30)  mentre invece le macchine possono aiutarci a vivere con la nostra paralisi!

Mi auguro di riuscire a spiegare che questi dispositivi non possono assolutamente fare questo.

È molto preoccupante, ma sembra che la cura delle lesioni spinali sia stata dimenticata a vantaggio di gadget che non fanno recuperare le funzionalità.

Noi Cure Girls vi invitiamo a sostenerci per dire che vogliamo trattamenti rigenerativi, non robot!

Siamo contro le macchine ed ecco le motivazioni:

  • non hanno nessun impatto sulle funzioni vescicali/intestinali/sessuali né sulla respirazione, soffriremo ancora per le infezioni
  • non hanno nessun impatto sulla sensibilità e i dolori neuropatici, continueremo ad avere dolore e bisogno di farmaci
  • non influiscono sulla funzionalità di braccia e mani, un grave problema per i tetraplegici
  • richiedono assistenza per essere utilizzati, quindi sono un ostacolo all’indipendenza
  • sono ingombranti, lenti e non pratici per l’uso quotidiano, per non parlare dei costi
  • non possono essere utilizzati da chi ha subito una lesione alta, poiché è richiesta la stabilità del tronco

Ma il problema più grave è che questi dispositivi vengono etichettati come “cura”, dispositivi che risolverebbero i nostri problemi.

Spero che questo blog abbia chiarito che i robot NON risolvono NESSUNO dei nostri problemi.

Se la paralisi vincerà il premio, un cospicuo finanziamento per la ricerca verrà dirottato per sviluppare macchine che non faranno nulla per il recupero delle funzionalità.

Unisciti alle Cure Girls per dire NO! ai robot e SI! alla medicina rigenerativa.

Basta andare sulla FB page del Longitude Prize  o su Twitter @longitude_prize e postare il proprio commento.

May 4th 2014 The Cure Girls took part in the Wings for Life World Run

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May 4th 2014 the Cure Girls took part in the Wings for Life World Run. Arcangela and Loredana in Italy, Maaike in the Netherlands and Sabrina in Brazil. The other Cure Girls that couldn’t be present supported this event spread all over the world Capitalise Wings for Life World Run.LORY

The Wings for Life World Run was very well supported. And for those of us that couldn’t be present. We maintain the push forward for a Cure. This was an event which showed a very positive show of support. We need to continue to build on this and ensure we carry on showing the world how important a Cure means to us all.

The World run is a truly global adventure, encompassing 34 locations, in which everyone runs at the very same time all over the world! 100% of the proceeds from the event will go to the Wings for Life Foundation, which funds research into curing spinal cord injury. The run unite athletes around the world, in one race, running for those who can’t! We’ve been blown away by the spirit of everyone who partecipated and who followed wings for life world run 2014. The results are in: wings for life world run global male winner: Lemawork Ketema (ETH) ran 78,57 kilometers and outperformed 35.396 athletes from 164 nationalities around the world. Global female winner: Elise Selvikvag Molvik (NOR) with a distance of 54,79 km.

And over 3,000,000 euros raised for wings for life, spinal cord research foundation. Thank you for your support of wings for life world run 2014! The journey continues next year: 3rd may 2015. See you next year!

Cure Girl Loredana and Rebecca

 

DRENTHE – IN THE NETHERLANDS

Last sunday I went to the run in my own country, the Netherlands. The start was at the TT- circuit in Assen. The weather was good, so it was a great day for the runners and the people who were watching them. It was amazing to see so many people, famous and not famous, run for a great cause: a cure for spinal cord injury.

MAAIKEFor the first time since my injury i heard people talk about a cure for sci, not only when i was there, but also in the weeks before the run. I was getting used to the fact that doctors want to send me to a good psychologist when i tell them that i believe a cure for spinal cord injury is on the horizon. Of course, i know it’s gonna be difficult for people with an old injury like me, but it’s not impossible. Researchers say thats it’s a guestion of when, not if. So there is definitely hope for everyone living with a spinal cord injury. And i hope that an event like the wings for life world run will speed up the process. It would be great to live in a world where spinal cord injury is something of the past.

I want to thank the people who were running for me. Next year i hope i will have many more familymembers and friends involved in this run. They have a year to train, so i don’t see any problems!

Cure Girl Maaike

VERONA, ITALY

On May 4th the Cure Girls were present at the race in Italy which took place in the magnificent Verona, a Unesco World Heritage Site.
A beautiful day in all respects. It  was a typical spring day and many participants enthusiastically responded to this unique competition. It was for a great cause; a one that has unfortunately been ignored. SPINAL CORD INJURY MUST BECOME CURABLE and finally this message was given in a loud voice.
la partenza a VeronaIt was an exciting start and funny to follow the developments of the race both in Italy and around the world thanks to continuous updates provided by the organizers.
Many celebrities from the world of sport and other professions participated. These influential people wanted to contribution by participating in this important event.
Awesome time and miles made ​​by professional racers who competed until completely worm out. Our Giorgio Calcaterra won In Italy as male runner and was 4th in the world ranking.
Also a great number of  “ordinary” people participated,  contributing  and allowing  Wings for Life to raise a global total 3,000,000 Euro. This amount will be completely used to support research projects that we, Cure Girls, continue to ask to be primarily for chronic injuries .
In short, it was great to see so much participation and to finally hear about how important a cure is!
Keep it up and …see you the May 3rd, 2015 for the second edition!

Cure Girl Arcangela

The first edition of Wings for Life World Run was a success, over 3 million euros were raised which will go to fund research projects of the Wings for Life.

I am one of the many people who contributed to this and I am also one of the many people with a spinal cord injury who have had someone to run for her/him. Il papà di LoredanaThe great dad of Loredana ran for me too… but there were two other people who were not physically present in Verona, but they did that race with their heart and spirit… my sister and her husband Giovanni; I will always thankful for their support. And I was there too! I wanted to participate in my own way to this extraordinary event, pedaling with my special bike when all the runners around the world were at the starting line. I wanted to do that because it was the only thing I could do, since just the consequences of my spinal cord injury did not allow me to go to Verona and attend the race.

BarbaraFor this reason, although I was symbolically the first to be reached by the catcher car, with my ride of 30 g/min, it was as if I ran all the miles made ​​by all participants, to proclaim to the world that the spinal injury must become curable.

Cure Girl Barbara

 

 

 

FLORIANOPOLIS – BRAZIL

SABRINAIt was still dark and I was eager to join that which would be the most important race I’ve ever participated. The WFLWR has the noble mission to reverse 100% of their entries in grants to research for the cure of spinal cord injury, but also brings to the whole world, and that is more than 35 cities in different countries which took part in this first edition, the commitment to generate funds for researchers.

Exactly at 7 am it was the start in Florianopolis, and the equivalent time across the world, even where it was still dawn. This brilliant strategy was to create the spirit of sharing on the same day, at the same time, for one cause. It was an immeasurable honor to participate to this event and to be able to mobilize 20 friends who came to Florianopolis to run with me. I am so grateful to them and to those who contributed even if they could not run.

The human beings stand out from animals when they use their intelligence to help the others. That was the feeling I had when I was running with my sister and my friends: bringing hope to many who are in a situation like mine, being able to talk about it in the most popular tv show of the country, to make understand the urgency for a cure to those who are not in a wheelchair.

And this was a great success because of the many messages I received afterwards.

After I ran for 11 km, the certainty is that in May 3, 2015 I will be there again, and so until the day when the thrill of crossing the finish line will be replaced by the happiness of seeing the first steps of people coming back to walk.

Cure Girl Sabrina

Ainda era noite e eu estava ansiosa para me juntar àquela que seria a corrida mais importante que eu participaria. A WFLWR tem a nobre missão de reverter 100% das suas inscrições em verbas para pesquisar a cura da lesão medular, mas também leva ao mundo inteiro, e isso representa muito mais do que as 35 cidades em diversos países que fizeram parte desta primeira edição, o compromisso de gerar fundos para pesquisadores.
Exatamente as 7h foi dada a largada em Florianópolis e no resto do mundo, mesmo aonde ainda era madrugada. Essa estratégia foi genial ao criar o espírito de juntos no mesmo dia, na mesma hora, por uma causa. Foi uma honra imensurável fazer parte do evento e conseguir mobilizar 20 amigos que se deslocaram até Florianópolis para correr comigo. Gratidão eterna a eles e aos que contribuíram, mesmo sem poder ir.
O Ser Humano consegue se destacar dos outros animais quando usa a sua inteligência para fazer bem ao próximo. Foi essa sensação que tive ao correr com minha irmã e amigos: Levar esperança a tantos que se encontram numa situação semelhante a minha, poder falar a respeito disso na maior emissora de televisão do País, acreditar que a urgência por uma cura pode ser enxergada até por quem não esta em uma cadeira de rodas. Sucesso total ao conseguir ver o retorno de tudo isso em belas mensagens, formando uma grande corrente do bem.
Ao fim foram 11km percorridos e a certeza de que em 3 de maio de 2015 estarei lá novamente, e assim até o dia em que a emoção de cruzar a linha de chegada seja substituída pela felicidade de ver os primeiros passos de quem que reaprende a andar.

Cure Girl Sabrina

CHARITY EXTRAVAGANZA NIGHT IN AID OF SPINAL RESEARCH

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EXTRAVAGANZAOn Saturday 31st May my best friend Freda and I are organising a CHARITY EXTRAVAGANZA NIGHT in aid of Spinal Research. It is being held in a cool venue called Yager Bar which is in St Pauls, Central London. The tickets are £60 each and that includes admission, glass of champagne and also appetisers along with a great line up of entertainment. We are very lucky to have the help of a fantastic PR guy called Victor Trocki who has worked promoting members of the Royal family, celebrities, wag’s etc. Victor has organised many events and we really couldn’t put this together without him and are so grateful that he is really wanting to support our cause of finding a cure for spinal cord injury. We have some great acts all of which are giving their time and support free of charge. Mozez

Mozez, ex frontman of the group Zero 7 will be performing. So excited as I’m such a big fan of his and have seen him perform live… he’s amazing.

CARLA THOMAS

Carla Thomas will be performing and she has worked with amazing artists such as Alexander O’ Neal. A very good friend of mine Carl will be doing his drag act, very funny guy along with some dancers and glamorous girls circulating the crowd. Also we have auctions and raffles with some fabulous prizes to be won. After all of the acts and auctions you’ll be able to party the night away as we also have a couple of DJ’s lined up.

Media will also be involved so hopefully good coverage in newspapers etc too. The tickets are selling fast so purchase yours now by contacting myself or Freda 07770-418-482 or you can contact Michelle Marsh directly at Spinal Research on 01483-898-786. I would like to thank everyone who is contributing to this superb evening. Both myself and Freda are so thankful for everyone’s generosity. See you on the 31st everyone for raising as much money as we possibly can to fund a cure for paralysis. Myself and the CURE GIRLS will keep on fundraising and campaigning until we can regain our independence and also WALK ONCE MORE.

From Cure Girl Lolly x

Barbara: “I THOUGHT IT WAS JUST A TEMPORARY SITUATION”

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Barbara BucciRead Cure Girl Barbara’s story on Wings for Life, Spinal Cord Research Foundation website 

Barbara: “Pensavo fosse una situazione temporanea”

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La storia della nostra Cure Girl Barbara è stata pubblicata sul sito della fondazione austriaca Wings for Life che da anni sostiene la ricerca sulle lesioni spinali.

Qui di seguito troverete la traduzione in italiano. Buona Lettura!

Barbara BucciCome hai avuto la lesione spinale?

Una caduta dall’altalena nel 1987, quando avevo solo 11 anni, ha causato lo scivolamento delle vertebre cervicali che hanno danneggiato il midollo a livello C4-C5.

Qual è stato il tuo primo pensiero dopo l’incidente?

Ero spaventata perché non riuscivo a muovere nulla… ma pensavo fosse una situazione temporanea.

Come è cambiata la tua vita dopo la lesione?

Tutto è cambiato, non posso fare nulla da sola dopo la lesione. 

Quali sono le barriere più grandi nella tua vita quotidiana?

Il fatto che ho bisogno dell’aiuto degli altri per svolgere tutte le azioni necessarie alla vita di ogni giorno.

Quali sono gli aspetti più positivi nella tua vita?

Finora il fatto che non posso fare a meno di sperare che qualcosa possa cambiare in modo positivo in un futuro non troppo lontano.

Quali sono i tuoi sogni per il futuro?

Direi “camminare di nuovo”… ma dopo 27 anni di tetraplegia, sarei la persona più felice del mondo se solo potessi recuperare l’uso funzionale delle mie braccia e delle mie mani, così non avrei più bisogno di essere assistita.

Cosa speri dalla ricerca per la cura delle lesioni spinali?

Vorrei che la ricerca si muovesse di più verso lesioni spinali croniche; infatti, al momento, la maggioranza degli studi clinici si concentrano sulla fase acuta delle lesioni.*

Come trovi l’idea della Wings for Life World Run?

Credo che sia un evento grandioso, il modo migliore per raccogliere i fondi da destinare alla ricerca e per mettere in luce il problema della lesione spinale, una patologia che comporta gravi conseguenze oltre alla paralisi in sé per sé.

Parteciperei alla corsa o hai degli amici che lo faranno per te?

Non potrò partecipare a questo evento correndo, ma mi sono iscritta lo stesso, così posso contribuire a far sì che la ricerca vada avanti. E finora non c’è nessuno che possa correre per me… a ogni modo, mi piace immaginare che ogni persona che parteciperà all’evento, in ogni parte del mondo, correrà anche per me.

C’è qualcos’altro che vuoi aggiungere?

In questa battaglia non sono sola, sono una delle Cure Girls, un gruppo di donne da tutto il mondo in missione per rendere la paralisi reversibile.

*A breve Wings for life dovrebbe pubblicare un articolo esplicativo riguardante le differenze della lesione spinale nella fase acuta e cronica, nonché i relativi approcci della ricerca.