A paralysed man has been able “to walk again” after a pioneering therapy that involved transplanting cells from his nasal cavity into his spinal cord.
Read more and watch BBC Panorama To Walk Again BBC Documentary 2014
Archivi categoria: Cure Girls (English)
Blog Posts In English
CURE GIRL’S Lolly and Sabrina’s Brazilian Mission for Spinal Research
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
Public hearing for the Cure Girls at the Commission “Health and Social Affairs” of the Regional Council of Lombardy
Last Tuesday, July 22, the Cure Girls Arcangela, Marina and Loredana were in the headquarter of the Regional Counsil of Lombardy to ask for fund to support the research of a cure for paralysis.
The 3rd Commission “Health and Social Affairs” has listened to the proposal explained by Loredana, as the vice president of Marina Romoli Onlus Association, about the establishment of a fund to support the research of a cure for paralysis due to “chronic spinal cord injury”.
The president Fabio Rizzi and the councilors Maria Teresa Baldini, Paola Macchi and Lara Magoni shown to be favourable at this initiative and willing to follow it in all the bureaucratic procedures needed. Our group was fully available to submit further ideas about the kind of reserach to fund, names of expert researchers in the field to get in touch with and excellence centers to take account of in order to develop a new research project in Lombardy.
We realise that the road leading toward a cure for paralysis is still long and full of obstacles, but we hope the sensitivity and the interest shown to us by the members of the commission will help accelerating the progress to make Chronic spinal cord injury curable!
Cure Girls
The Endparalysis Foundation
An exciting new cure foundation has been launched by a paralysed woman in the Netherlands. The Endparalysis Foundation has been set up by Corinne Jeanmaire, a dedicated cure advocate who was paralysed in a car accident in 2001. The Foundation’s primary goal is to accelerate the translation of biological therapies for chronic spinal cord injury by co-financing promising research projects. 100% of all funds raised by the foundation will go directly to research. The Foundation has a very strong scientific base with experts including Dr Mark Bacon, Scientific Director at the UK’s International Spinal Research Trust, Professor Jerry Silver from Case Western Reserve University, USA and Professor Joost Verhaagen from the Netherlands Institute for Neuroscience. As well as fundraising, within the coming year foundation also aims to engage scientists build a collaborative network in order to develop a flexible roadmap for accelerating combination therapies.
Please support this great new cure foundation by having a look at the website here and liking it on facebook here.
Cure girl Ruth
CURE GIRL LOLLY’S BIG NIGHT OUT
On Saturday 31st May we held a charity fundraiser in aid of Spinal Research. I organised it along with my best friend Freda, the help 
also of Michelle from event department at Spinal Research and we were very lucky to have the input of our friend, Victor Trocki. Victor is one of the best PR men in the UK and has worked alongside celebrities, royalty etc. We wanted to organise a night of entertainment, music and fun to raise as much money as we possibly can for our cause. It was held at Yager Courthouse Bar, St Pauls in Central London and we had the amazing singers Olivia O’Connell who is only 14 years old and is up and coming talent, Carla Thomas performed an acoustic set which was spellbinding and Kyla who sang some popular tracks that got everyone singing along to. We had David dj’ing at the beginning of the evening and to finish the evening and getting everybody dancing and on their feet was DJ ITAL. A great night was had by all and we even had the famous worldwide Harry Potter lookalike Luke Williams doing some magic tricks around the audience. 
Very funny indeed. The ticket price was £60 each and that included a glass of champagne and an array of delicious hot and cold canapes. A harpist was playing on arrival thanks to Lucy. So beautiful. Auction and raffle prizes were up for grabs and we had a beautiful Marilyn Monroe picture donated by Joanne Lawrence at Glamour Art Interiors, Photoshoot by uber-talented Michelle George, L’Occitane and Christian Dior goodies, a weekend in a boutique hotel in Dublin, bespoke items for the home from Alan at www.vintageplayingcards.co.uk, Hair cut and colour by the Blow Bar, Islington, tickets to Miss England Rocks, Meal at Harrys Bar even a voiceover on the film The Rapture yet to be released donated 
by the superb filmaker William Steel. Such a funny, entertaining evening and on behalf of Freda and myself we would like to thank everyone who attended and all the performers who gave up their valuable time for us and all who donated prizes.
Lastly a big THANK YOU to Victor Trocki for compering on the night and helping us put together a really great night. It was very hard work but was worth it in the end as we raised over £5,000 for Spinal Research who fund vital research into a cure for spinal cord injury.LET’S MAKE SPINAL CORD INJURY CURABLE
Cure Girl Lolly
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 )
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?
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
Help the Cure Girls & Sign this Petition!
We 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.
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.
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.
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.
For 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.
It 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. 
The 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.
For 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
It 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
On 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, 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 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
CURE GIRLS 