Cure Girl Lolly visit the new Central London location of Spinal Research

Lolly a SROn September 15th, I was delighted to visit the new Central London location of Spinal Research to see the team and fab new office. They moved just recently all the way from Guilford, Surrey to Moorgate, London and are still in the process of setting in their new location with new members of staff too. I had a chat with Mark and the team about clinical trials, Cure Girls new campaign, fundraising and some ideas on how we can raise the profile of the charity. There are lots of events on the calendar and the Cure Girls will continue to support Spinal Research any way we possibly can. Italian Cure Girl Barbara Bucci is about to start a fundraising challenge for Spinal Research- a virtual cycle! It’s imperative that we support Spinal Research’s vital work that funds the research we so desperately need for a cure for paralysis as it is not government funded. A very big thank you to Mark and the team for taking their valuable time to see me and look forward to the rest of this years Spinal Research & Cure Girls events! Watch this space! #LETSMAKECHRONICSPINALCORDINJURYCURABLE

Cure Girl Lolly.

My visit to Project Walk Orlando

3This year my family and I chose to go to the rehabilitation center “Project Walk “.  I wanted to see what they do and how they are helping get people on their feet again. I have been following Project Walk in the news and on facebook for some time. I was always interested in how they do things. Being a paraplegic I’m eager to learn anything that can help you back to your old self again. I found Project Walk very encouraging. I was stunned watching some of their clients do exercises I believed that we would never be able to do again and from someone who talks a lot(understatement my husband would say) I was absolutely gobsmacked at the results they were showing, just fantastic!!
Project walk give every SCI person the hope of recover1 Project Walk Orlandoy. Using external stimulation for the nervous system to promote reorganization they are reminding the nerves and muscles how to work again. Muscle spasms are used to build muscle mass and control, using the spasms rather than having to fight against them. They do a lot of weight bearing activities; this in itself promotes healthy bones and fitness. They do not say people will be hopping and skipping out of the door. They do say the best case is a client can regain function and continue to improve as the exercises help a client’s body to remember how to move. Worst case is the client will just leave more independent and healthy. The health benefits are great and this is something that is very much needed for a SCI person. Taken from Project walks site the below are results.

Results in:

  • Increased central nervous system activity
  • Increased muscle mass
  • Increased circulation
  • Increased sensation in some clients
  • Increased hot and cold in some clients
  • Increased control of life
  • Decreased pressure sores
  • Decreased use of medications
  • Decreased health problems associated with a spinal cord injury
  • Hope

ThereforRebecca - Project Walk Orlandoe this kind of therapy benefits all of us. It’s not a cure for paralysis but is a great way to get our bodies fit, possibly improving movement and sensation and all of the above.As a Cure Girl I believe this is something that should be set up around the world, we all could use a Project Walk. I would like to thank Liza, Amanda and Brock for showing my family and I around and I will definitely be back.

For more details on Project walk go to http://www.projectwalkorlando.org/

Cure Girl Rebecca

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

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

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!

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

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