Le Cure Girls spingono per la Cura

the cure girls team

Nelle ultime settimane le Cure Girls hanno partecipato ad alcuni importanti eventi sportivi per poter condividere con un pubblico sempre più ampio il nostro messaggio a supporto della ricerca di una cura per la lesione spinale cronica.

Lo scorso 3 maggio abbiamo partecipato alla Wings for Life World Run 2015. Il nostro motto è stato: “Io spingo per la cura – I push for a Cure”.

Le Cure Girls Arcangela, Barbara e Loredana hanno spinto per la Cura in Italia, a Verona, mentre Sabrina faceva la stessa cosa, nello stesso momento in Brasile. Al nostro fianco un vero e proprio Cure Girls Team; un nutrito gruppo di amici e sostenitori che hanno corso con noi e ci hanno supportato.

Clicca per vedere tutte le Foto e i video: “Perché Valeria ha corso la WFL World Run” e “Sabrina e il cure girls team Brasiliano”.

Chi non poteva essere presente a causa delle conseguenze della lesione spinale o perché impegnato in altri eventi di raccolta fondi, come ad esempio la nostra Cure Girl Marina, ha comunque fatto sentire la propria presenza mandandoci un video (Marina con Stefano Pirazzi dalla Granfondofiuggi Valerio Agnoli) o contribuendo a diffondere il messaggio della World Run tramite i social network.

Alla World Run hanno partecipato più di 100000 persone e sono stati raccolti circa 4,2 milioni di euro da destinare alla ricerca.

loredana e marina al giro d_italia_Fotor_Collage

Per continuare la nostra opera di sensibilizzazione e di raccolta fondi per la ricerca di una cura che possa finalmente rendere la paralisi reversibile, le Cure Girls Marina e Loredana sono state inoltre al Giro d’Italia (clicca per vedere tutte le foto) e prossimamente saranno presenti ad altri importanti eventi sportivi come ad esempio la Cycling Marathon che si terrà a Monza il prossimo 27 giugno.

Per supportarci ed essere informati sulle nostre attività, rimanete in contatto con noi tramite il nostro blog e le nostre pagine Facebook, Twitter e Instagram.

Cure Girls

The Cure Girls Push for a Cure

the cure girls team

In the past weeks, the Cure Girls have partecipated to many sport events to share our message in support of research to find a cure for chronic spinal cord injury.

On May 3th, the Cure Girls took part to the Wings for Life World Run 2015.

Our “motto” was : “I push for a cure”.

Arcangela, Barbara and Loredana pushed for a cure in Italy, while Sabrina at the same time was partecipating at the World Run in Brazil. The other Cure Girls supported the World Run promothing the event through friends and social media.

In our support we had a Cure Girls Team; a large group of friends and supporters who have raced with us.

Click to see photos and Videos: “Why Valeria ran WFL World Run”  and “Sabrina and the Brazilian cure girls team”.

More than 100 000 people have partecipated to the World Run and € 4.2 million for spinal cord research were raised.

loredana e marina al giro d_italia_Fotor_Collage

The Cure Girls Marina and Loredana also took part in the Giro d’Italia, the most important italian cycling event known around the world. (Click to see photos)

They will be also present at the Cycling Marathon and in other sporting events during the whole summer to continue raising awareness and funds for research to make chronic spinal cord injury curable.

If you want to support us, follow our blog and our  pages on facebook, Twitter and Instagram.

Cure Girls

Ride For Life 2014: le Cure Girls in pista per la ricerca

Il 15 e il 16 novembre scorso si é svolta ad Ottobiano la 5°edizione di Ride for Life, evento benefico organizzato da Riders4Riders Onlus, Marina Romoli Onlus, Ottobiano Motorsport in sinergia con la Federazione Motociclistica Italiana e la Federazione Ciclistica Italiana, in cui famosi ciclisti, motociclisti e altri personaggi del mondo dello sport si sfidano per raccogliere fondi da destinare a progetti di ricerca di una cura per le lesioni spinali e per dare una mano a giovani sportivi rimasti paralizzati a causa di una lesione al midollo spinale. Le Cure Girls naturalmente erano presenti per contribuire alla buona riuscita dell’evento. (Clicca qui per vedere le foto)

Cure girls - ride for life 2014Iniziamo col ringraziare tutti gli atleti che sabato 15 hanno sfidato la pioggia pur di poter gareggiare e dare il loro contributo alla nostra causa donando ricavato delle iscrizioni della gara di duathlon e di ciclismo amatoriale alla Marina Romoli Onlus.

Duathlon

La giornata di sabato si é poi conclusa con la cena benefica in compagnia di grandi campioni e animata dalle battute dei bravissimi speaker Paolo Mei, Francesco Nadile, Giancarlo Ricciotti e della showgirl Barbara Pedrotti.

dinner

La domenica il sole é apparso e i grandi campioni si sono sfidati con pit bike biciclette e go kart sotto gli occhi del pubblico accorso per incontrarli. Il team Daboot ci ha infine offerto un grande spettacolo di Free style.

Ride for Life 2014

Presenti molti giornalisti e commentatori televisivi tra i quali la bravissima Alessandra De Stefano e Guido Meda.

Aggiornato di recente4La Rai per seguire l’evento e le Cure Girls ha inviato anche Piergiorgio Giacovazzo, giornalista del tg2 che ha realizzato il bellissimo servizio che potrete vedere cliccando qui

cure girls on Rai TVNoi Cure Girls ringraziamo tutti quelli che hanno messo anima, cuore e risorse per  organizzare Ride for Life, in particolare i membri dello staff delle associazioni Riders4Riders Onlus e Marina Romoli Onlus,  il moto club e tutto il personale della pista South Milano. Un particolare ringraziamento ai numerosi campioni presenti, agli amici di I am doping free e alle autorità intervenute, in rappresentanza dalle istituzioni che hanno patrocinato l’evento, Regione Lombardia, Provincia di Pavia, Comune di Ottobiano, Gruppo di Azione Locale della Lomellina ed Ecomuseo del Paesaggio Lomellino.

Special thanksInfine grazie a tutto il pubblico presente e anche a quelli che ci hanno supportato, pur non potendo presenziare, per aiutarci a realizzare il nostro obiettivo: La Lesione spinale cronica deve diventare curabile.

 Cure Girls

Ride For Life 2014: Cure Girls on the track to support research

On November 16-17 the 5th edition of Ride For Life took place in Ottobiano organized by Riders For Riders, Marina Romoli Onlus, Ottobiano Motorsport, with the support of the Italian Motorcycle Federation and Italian Cyclist Federation. Top cyclists, riders and other famous sport people came together for this wonderful event in support of research to find a cure for paralysis. Cure Girls helped with the organization and attended to contribute to the success of the event (see photo gallery).

Cure girls - ride for life 2014

Big thanks to all the athletes of duathlon and cyclists that on saturday dispite the rain competed to give their contribution to our cause

Duathlon

Saturday ended with a very animated fundraising dinner with athletes, raiders and supporters all together.

dinner

Sunday a wonderful sun come out so people could watch all competitions of Pit Bikes, Cyclists, Go Kart and the Free Style exibition.

Ride for Life 2014The National TV came to cover the event (see the video )

cure girls on Rai TV

Cure Girls would like to thank all athletes and riders that have competed, all people who worked hard for the success of the event and all the people who attended to help us achieve our goal: Chronic Spinal Cord Injury Must Become Curable!

Special thanks

Cure Girls

Help the Cure Girls & Sign this Petition!

bbcWe have nothing against robotics and compensatory devices as they can be a useful complementary approaches. However, the attention and funding they get seems to be exaggerated when considering their potential results, particularly in comparison to the potential results of regenerative therapies. Yes, robots are exiting; when you see them you immediately understand what they do. Regenerative research is more complex, more obscure and maybe longer term. But it is the kind of serious and total investment we need if we really want to solve the problem. Regenerative medicine has the potential to create a future without paralysis. Robotics can only compensate for a fraction of the problems experienced by people with spinal cord injury and as many paralysed people know, paralysis involves a lot more than just not walking.

The BBC has reported on compensatory devices like wearable robotic suits, but has not reported on the real cure.

We’re asking for fair coverage of regenerative medicine. Click on the link below and then click to send your email.

Super simple & super fast! THANKS!

 Cure Girls

Support the real cure – not a robot!

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!

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

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

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

How to avoid the inevitable? The cure would be a good start.

For days now the same question echoes in my head: “Is it possible to change someone’s essence?” According to metaphysics, the “essence” of something is made by the unchanging qualities of that same thing. This definition alone serves to explain that, in essence, we cannot change what we are.

lais-souzaSince January 27™ I’ve been thinking about Laís Souza. The ex-gymnast has undergone 13 surgeries over the course of her career and, unable to return to the gymnastics, she accepted the invitation to try skiing. Many people will ask themselves “why didn’t she simply stop training and accepted her ‘limits’?”. My answer will be: because there is no such possibility.Once I watched a documentary about the human nature and the mechanism of self- preservation which refers to the fear of dying, and this is what prevents people from exposing themselves to risk situations, although some people simply do not have it.

Laís suffered a severe spinal cord injury, obviously it is too early for any prognosis but taking into account the style of life and the seriousness of the injury, no prognosis is satisfactory and probably the sport will never again be part of her routine. Thinking about the past of Laís, I bet that if it were not for the seriousness of the injury, she would soon go back skiing. I believe chemistry explains a lot about this, but to make it simple – without talking into consideration the endorphin and its variants – the desire to expose oneself to the risk is part of the essence of many athletes and even amateurs, like me for example, and no one can judge the essence of another. It is very likely that if I had not suffered an injury in the spinal cord, on a hot beach day like today, I’d be surfing and balancing myself on the air, even because I would have probably fallen before. I think that while we have an idea of the risk, we don’t have a device to trigger the fear. As for you, who’s reading this article at this moment and have already thought of taking your son’s skateboard away, I would advise: Only 6% of all spinal cord injuries occur while practicing sports, however more than 50% are resulted from car accidents.

How to avoid the inevitable?? How? The cure would be a good start.

wfl 4/5/2014On May 4th, Floripa will host the Wings for Life World Run, the first global race of the history, bringing together 35 cities of the world, running together, with 100% of the funds reverted to the researches in favor of the Spinal Cord Injury cure.

Run for Laís, run for me, but mainly: run for all those who in the future do not deserve to have their dreams interrupted suddenly, being either a close relative or a stranger. If you cannot run, you can still register to help, with only 26 dollars you will make a new world for a lot of people!  Cure Girl Sabrina