Archivio mensile:giugno 2014

CURE GIRL LOLLY’S BIG NIGHT OUT

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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 Carla Thomasalso 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. HarryVery 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 10478517_1493131037589684_328183482_nby 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!

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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

Help the Cure Girls & Sign this Petition!

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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

Aiuta le Cure Girls, sottoscrivi questa petizione!

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bbcNon abbiamo nulla contro la robotica, può essere un utile approccio complementare, ma l’attenzione e il finanziamento dedicatogli sembrano davvero essere esagerati se si considerano le potenzialità dei robot, rispetto a quelle delle terapie rigenerative.

Quindi sì, i robot stanno avanzando. Quando li vedi capisci subito quello che fanno. La ricerca rigenerativa invece è più complessa, più oscura e forse più “a lungo termine”. Ma è l’unico tipo di investimento serio di cui abbiamo bisogno se vogliamo davvero risolvere il problema!

La medicina rigenerativa ha il potenziale di creare un futuro senza paralisi. La robotica invece può compensare solo una piccola parte dei problemi incontrati dalle persone con lesione del midollo spinale e, come purtroppo molte persone paralizzate sanno, lesione spinale significa molto di più del mero non camminare ” .

La BBC ha puntato l’attenzione su dispositivi compensativi come tute robotiche indossabili, ma non ha parlato di vera cura .

Vogliamo  chiedergli di destinare la stessa attenzione alla medicina rigenerativa!

Se vuoi aiutarci, clicca qui, compila il form e invia la tua mail alla BBC!

Super semplice e super veloce ! GRAZIE !

Cure Girls