La Cure Map

Quello che vedrete è il trailer del documentario che sta realizzando Kelsey Peterson, una giovane americana tetraplegica che ha deciso di percorrere un difficile viaggio che la porti a visitare i luoghi in cui ci si sta adoperando per trovare una cura per la paralisi. 

La Cure Map è un’idea geniale anche se, per chi la sta percorrendo, non deve essere per nulla semplice da affrontare e le Cure Girls lo sanno bene. Aver avuto il supporto di fondazioni che si occupano di ricerca di una cura per la paralisi, avrebbe sicuramente facilitato il lavoro di Kelsey, che da questo punto di vista va ampiamente elogiata perché, nonostante tutto, non si è arresa ed ha trovato il modo per portare avanti questo progetto.

Confidiamo che i suoi sforzi non siano vani e che possano davvero portare ad una maggiore conoscenza di cosa significhi dover vivere con una lesione spinale e di quanto la scienza stia facendo per liberarci da questa condizione di prigionieri del nostro immobile corpo.

Potete seguire il progetto anche collegandovi alla pagina Facebook  The Cure Map .

In attesa di poter vedere il documentario girato insieme alla sua amica Madeline Brown, le Cure Girls augurano a Kelsey di riuscire nello scopo di sensibilizzare sempre più persone dando così speranza a chi ormai l’ha persa.

Cure Girl Loredana

Wings For Life World Run 2017 – Spingi per la Cura insieme alle Cure Girls

CG for WR

Il 7 maggio prenderà il via la quarta edizione della Wings for Life World Run e anche quest’anno tutte le Cure Girls daranno il loro contributo (clicca qui per vedere le immagini della nostra partecipazione alle precedenti edizioni).

La World Run è un evento mondiale che oltre a sensibilizzare permette di raccogliere fondi a favore della ricerca di una cura per la paralisi e per la quarta volta abbiamo deciso di sostenere questo evento formando un vero e proprio Cure Girls Team che ad oggi conta più di 30 partecipanti (e tanti altri se ne aggiungeranno).

Il nostro obiettivo è quello di far passare l’importante messaggio: “La Lesione Spinale Cronica Deve Diventare Curabile” per questo, se potete, vi chiediamo di collegarvi al sito della Wings for life World Run e iscrivervi  a questa corsa per chi non può più correre. Il 100% della vostra iscrizione sarà destinato a progetti di ricerca per rendere la paralisi curabile.

come iscriversi al cg teamDopo esservi iscritti potrete cliccare qui e seguire le istruzioni per aggiungervi al nostro Cure Girls Team. Vi basterà inserire dove richiesto, l’indirizzo e mail con cui avete effettuato l’iscrizione e cliccare “Unisciti al team”, accedere al link che vi verrà inviato via posta elettronica, spostare il “pulsante grigio” da sinistra a destra fino a quando non si colorerà di blu, infine confermare la volontà di far parte del nostro gruppo cliccando su “chiudi”.

Le Cure Girls vi aspetteranno in Piazza Castello a Milano il 7 maggio alle 13, e a Brasilia alle 8.

State al nostro fianco, correte/spingete insieme a noi per la cura della paralisi!

Ci vediamo il 7 maggio!!

Cure Girls

Society for Neuroscience meeting report for the Cure Girls by Sam Maddox

San Diego, California – The annual meeting of the Society for Neuroscience (SFN) ran for six days here in November, as more than 30,000 researchers and academics from 90 countries presented over 15,000 science reports covering a huge variety of brain and spinal cord topics.Neuroscience 2016

The meeting fills a giant convention center, row after row of bulletin boards displaying 3-ft. By 5 ft. data summaries of recent experiments; these are called posters, which are organized by theme. Each poster is displayed only for half a day; the main author is usually there to answer any questions from his or her peers. The cool thing about posters is that the work has not always been published in the medical literature, therefore giving the field a peek at what’s to come.

The rest of the convention floor includes hundreds of commercial vendors selling everything from mutated mice to multi-million dollar microscopes. One is struck by the enormous diversity of the neuroscience field, both in terms of the science itself, and of the international industry that sustains all of it.

There are of course many clinical or disease specific research areas, including studies of Alzheimer’s, stroke, pain, MS and visual degeneration. This year there were an abundance of discussions and posters on mosquitos (zika virus), football (concussions) and adolescents (autism).

I went on the lookout for clinical angles related to chronic spinal cord injury (SCI). Most of what is presented at SNF is not directly applicable to human disease or trauma. The agenda is driven by basic science, a myriad of hypotheses being tested in hopes of figuring out the central nervous system. It’s a biologist’s pleasure dome with a wide focus: gene editing, nervous system mapping, neural development, sensory and motor systems, cognition, neuroethics, addiction and plenty more. The meeting can be overwhelming, but navigation toward the areas of one’s interest has been made easier now with phone apps and online tools. If you’re inclined, have a look at this year’s program; you can search for a topic of specific scientist. SFN staff curated several schedules, including one for brain and SCI.

In this article we’re going to look at a few SNF science presentations I came across that have potential for chronic paralysis: 1) Modification of spinal cord scarring to allow nerves to grow across a non-permissive environment; 2) use of cell therapies in restoring function after SCI.

The scar:

After injury to the spinal cord, the damaged area loses a lot of nerve cells, which are cleared out by the immune response; a cavity forms and is eventually lined by a type of scar. Nerves have some capacity to grow after injury but this scar is a barrier. Jerry Silver, a scientist from Case Western in Cleveland, Ohio was the first to characterize the scar (chondroitin sulfate proteoglycans) and to imagine ways of getting rid of it. He and others found that by using a bacterial enzyme called chrondroitinase, they could chemically digest the scar – even in long term injuries. If you follow SCI research you have heard of this stuff, nicknamed ‘chase;’ it has been used in experiments to allow nerve axons to cross the scar and restore significant amounts of function. It’s a deceptively simple idea, just apply chase-juice to clear the path for regeneration. There are many issues with the juice, though, including how to deliver it safely in a human animal.

Previously, Silver used chase along with little nerve grafts to rewire and restore breathing function in tetraplegic lab animals. Said he in 2011, “Our work is to-date one of the most convincing demonstrations of the return of robust function after paralysis.”

I ran into Silver at an SCI-related poster session. He remains one of the most hopeful researchers when it comes to chronic SCI, and he was bubbling with enthusiasm for the “shocking recovery” seen in his most recent work: animals with what he called “super chronic” paralysis, one and a half years post injury, respiratory function was restored to “essentially normal” after getting chase and serotonin, a chemical needed for nerve transmission.

“This is the culmination of 30 years of work,” Silver said. “Apparently the longer we wait the better. I had some animals which we basically forgot about in the basement. We thought, why not try our treatment. It was astounding. Within two weeks there was complete recovery. Sometimes accidents can be good!”

Silver said he next wants to target systems other than respiration, such as hand function, or bladder, using chase or a peptide his lab has developed that prevents the growing tips of axons from getting stuck on sugary proteins of the scar.

emily-burnsideWhen I ran into Silver he was observing a poster being presented by Emily Burnside, a member of the Elizabeth Bradbury lab at King’s College, London. Bradbury and her group are leaders in applying chase to SCI; she is co-principal investigator for major push, called CHASE-IT, to bring this stuff to clinic. The funding for this comes from the UK based Spinal Research charity.

Burnside’s poster, “Regulateable Chondroitinase ABC [aka chase] gene therapy as a treatment for spinal cord injury,” could hasten time to the clinic. She explained that the lab had previously delivered chase to the injured spinal cord of animals using a gene modification strategy by way of a virus that ferried the gene code for chase to neurons in the injury site; chase is then produced by the nerve cells themselves. One of the issues with chase is that it doesn’t last long once administered, so it has to be given repeatedly. Gene therapy addresses that. “This treatment [gene therapy vector] resulted in dramatic reduction in pathology and significant improvements in functional recovery following clinically relevant spinal contusion injury at both thoracic and cervical levels in adult rats,” the poster noted.

A potential problem with a viral delivery system is that once the cells are turned on to make chase, they can’t be shut off. Too much chase may produce unwanted effects. So Burnside used a second vector to introduce a sort of on-off switch. “This gives us more control over chase, and allows us to optimize its timing,” said Burnside. “It is a step toward clinical relevance of the enzyme.”

Bradbury and her team were involved in several other posters. One presented data on a primate SCI model, using chase plus Schwann cell transplants; the treated animals improved almost to normal. This project is led by James Guest at the Miami Project to Cure Paralysis; Guest is principal investigator for a human trial in Miami of Schwann cell transplants in patients at least one year post injury.

I came across another poster on scar, this one from the UCLA lab of Michael Sofroniew, who has been saying for years that it’s wrong to blame the scar for the mediocre regenerative effort of spinal cord axons. Here, he and his lab mates show more data that the scar is not the bad guy, in fact, it actually helps regeneration. They used a bunch of growth additives to get axons to grow through the toxic scar area, but they did not do as well if the scar itself was removed. From the poster detail: “… preventing astrocyte scar formation, attenuating scar-forming astrocytes, or deleting chronic astrocyte scars all failed to result in spontaneous regrowth of transected corticospinal, sensory or serotonergic axons through severe spinal cord injury lesions. In striking contrast, sustained local delivery …  of required axon-specific growth factors not present in SCI lesions, plus growth-activating priming injuries, stimulated robust … sensory axon regrowth past scar-forming astrocytes and inhibitory molecules in SCI lesions. Preventing astrocyte scar formation worsened this stimulated axon regrowth …  Our findings show that contrary to prevailing dogma, astrocyte scar formation aids rather than prevents CNS axon regeneration.”

Cells therapies:

Paul Lu is a researcher in the San Diego lab of Mark Tuszynski, a veteran investigator who, like Silver, has never lost hope in the concept of spinal cord regeneration. Lu is motivated by personal reasons. He was paralyzed below the waist in an auto accident in 1996 while in grad school. He changed his major from botany to neuroscience, joined the Tuszynski group and has been responsible for some eye-popping stem cell research in an SCI animal model. A 2012 study showed that after implantation of neural stem cells, along with a cocktail of growth-promoting chemicals, spinal cord nerve fibers grew abundantly, and at great distances from the injury site. Lu saw no meaningful recovery but hopes that’s being worked out.paul-lu

The lab reported at SFN that they had transplanted human neural stem cells into a primate model, a major step toward clinical usefulness. Adult rhesus macaques underwent C7 lateral hemicontusions [most common type of injury, but only one side affected] or lateral hemisection lesions [cut, not bruised]. The human stem cells were grafted into the SCI sites between 2 and 12 weeks after injury. Each animal got 20 million cells, suspended in a fibrin matrix and growth factor cocktail. Surviving grafts differentiated into both neurons and glia; hundreds of thousands of new axons grew, some growing as far as two inches. The study notes that the delivery of cells must be optimized before this can be tried in humans.

The Tuszynski lab, though without Lu, presented a poster at SNF showing that multipotent neural progenitor cells (NPC) supported axonal outgrowth and improved functional outcomes in a cervical contusive injury model. That was a sub-acute experiment, with cells transplanted at two weeks. The lab stated that they are now assessing NPC grafts in models of chronic contusive injury.

Another cool area Lu and the Tuszynski group are working on is using light sensitive cells (optogenetics) to a) make better connections; and b) to allow them to turn cell functions on and off during experiments. The lab is also on the trail of “master regulators,” the gene codes that could activate programs for axon regeneration.

At SFN, Lu told me the next big improvement in regeneration of stem cells will be the cells. He’s already experimented with induced pluripotent stem cells (iPSC), which are cells from an animal’s own body that are put in reverse, essentially becoming a type of stem cell that can take on any cell form. “New tools allow us now to make phenotype specific neural cells,” said Lu, which means he can make a cell that has the most desirable features.

There were many posters about iPSC. While the cells may have a high safety profile because they come from a patient’s own body, which also makes null the ethical issues regarding embryonic or fetal stem cells, iPSC carry some of the same baggage as other stem cells: they can form tumors. A group from Japan, led by Masaya Nakamura from the Keio University School of Medicine in Tokyo, is already to using human iPSC/oligodendrocyte precursors in animal models to show that the cells promote remyelination and that iPSC grafts integrate with host neuronal circuits and form synapses. On a poster here, the group showed that two lines of iPSC cells promote motor recovery but one forms tumors. A goal of the work, besides repairing SCI damage, is safety, that is, to develop genetic quality controls to make sure a particular iPSC line does not overproduce itself and make tumors.

The Michael Fehlings lab from the University of Toronto is actively looking at many types of interventions for SCI, including iPSC. In a poster at SFN, his group transplanted pluripotent stem cell derived neural precursor cells that were further modified to secrete a potent growth promoting molecule called GDNF. Animals got the cells two weeks after injury, so this is not considered an approach to chronic SCI, but the GDNF animals showed more recovery than those treated with precursor cells only.

Maybe there won’t be a need to add cells from the outside. Researchers are now finding ways to manipulate cells already in the body — to expand them, and perhaps to reprogram them take on new functions.

Lu noted the work of Chun-Li Zhang, at UT Southwestern, who has reprogrammed astrocytes in spinal cord scar cells to neurons. Zhang presented at an SFN symposium on creating spinal motor neurons from reprogrammed adult human fibroblasts (skin cells); this has a more obvious application in ALS but could have a role to play in spinal cord injury. Zhang also showed data on reprogramming neural cells in vivo – in a living animal – with potential in a spinal cord injury model. From the abstract: “Our ability to successfully produce a large population of long-lived and diverse subtypes of new neurons in the adult spinal cord provides a cellular basis for regeneration-based therapy for SCI.”

by Sam Maddox

Me before You: “Can you really blame this man for his choice?”

Me before you 1Few weeks ago the film “Me before you” has been released in England; it is based on the book by the English writer Jojo Moyes which I finished reading some days ago. This is about Will Traynor, a handsome, rich, active young man, with a great career, who finds himself quadriplegic following a spinal cord injury (quadriplegia = paralysis in all four limbs).

After two years in such conditions, he decided to give himself six months time to “organize” his assisted suicide. Meanwhile his parents search for a carer, and it comes a girl next door, Louisa Clark, at the beginning unaware of the decision of his employer, but when she found out it she decided to make him live as many experiences as possible to try to dissuade him from that idea.

On the issue of euthanasia many disabled people have raised their protests:

“Why cinema depicts us negatively? Why do we have to appear weak, submissive, eager to get rid of our life if it doesn’t gives us everything we want? Life is worth living even with a disability, and it can be even happier than a life with no disabilities…” and so on.

Well, to all disabled people who got offended by this “negative” behaviour of the protagonist of the story, I’d like to say: you have made, consciously or not, the choice to live in spite of everything (that’s been my choice too so far). So live your life as you think, without worrying about what non-disabled people may think of you… because whether you’re happy or not with your disability or “different ability” (name it whatever you want, it does not change its meaning), non-disabled people will always be afraid that such a fate could happen to them, so they will admire you for your strength (someone will even envy you), but they will always think “if this shit happens to me, I could not bear it.”

Also there is no need to be scandalised by those who “accept” the dramatic decision of a family member to put an end to his/her life full of suffering.

It takes courage to choose to live in spite of everything, but choosing to die is not a light-hearted decision. It is not an act of cowardice and it should be respected.

And finally: if you are a disabled with no need to be assisted in doing the activities of daily living, you don’t have the arguments to judge properly… so please don’t play the role of moralist.

This is what Will says to Louisa about his intention to die:

me before you cover film“I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity and…”

“I would never think that!”

“You don’t know that, Clark! You have no idea how this would play out. You have no idea how you’re going to feel even six months from now. And I don’t want to look at you every day, to see you naked, to watch you wandering around the annexe in your crazy dresses and not… not be able to do what I want with you. Oh, Clark, if you had any idea what I want to do to you right now. And I… I can’t live with that knowledge. I can’t. It’s not who I am. I can’t be the kind of man who just… accepts”.

Just take some time to think about that… can you really blame this man for his choice?

Cure Girl Barbara

Seguici alla Wings For Life World Run

wflwr banner

Milano – Brasilia

Manca poco alla Wings for life World Run e le Cure Girls si stanno preparando per spingere per la cura insieme ai tanti sostenitori che si sono uniti al Cure Girls Team.

Se non potrai essere con noi a Milano o a Brasilia seguici sulla nostra pagina Facebook, pubblicheremo foto e video in questo album . #staytunes #curegirlsteam

#lalesionespinalecronicadevediventarecurabile #curegirlspushforcureparalysis

Cure Girls

Wings For Life World Run 2016 – Spingi per la Cura insieme alle Cure Girls

CG for WR

Manca poco più di un mese la terza edizione della Wings for Life World Run e anche quest’anno tutte le Cure Girls daranno il loro contributo (clicca qui per vedere le immagini della nostra partecipazione alle precedenti edizioni).

La World Run è un evento mondiale che oltre a sensibilizzare permette di raccogliere fondi a favore della ricerca di una cura per la paralisi e per la terza volta abbiamo deciso di sostenere questo evento formando un vero e proprio Cure Girls Team che ad oggi conta più di 30 partecipanti (e tanti altri se ne aggiungeranno).

Il nostro obiettivo è quello di far passare l’importante messaggio: “La Lesione Spinale Cronica Deve Diventare Curabile” per questo, se potete, vi chiediamo di collegarvi al sito della Wings for life World Run e iscrivervi  a questa corsa per chi non può più correre. Il 100% della vostra iscrizione sarà destinato a progetti di ricerca per rendere la paralisi curabile.

come iscriversi al cg teamDopo esservi iscritti potrete cliccare qui e seguire le istruzioni per aggiungervi al nostro Cure Girls Team. Vi basterà inserire dove richiesto, l’indirizzo e mail con cui avete effettuato l’iscrizione e cliccare “Unisciti al team”, accedere al link che vi verrà inviato via posta elettronica, spostare il “pulsante grigio” da sinistra a destra fino a quando non si colorerà di blu, infine confermare la volontà di far parte del nostro gruppo cliccando su “chiudi”.

Le Cure Girls italiane Arcangela, Barbara, Loredana e Marina più l’inglese Lolly vi aspetteranno in Piazza Castello a Milano l’8 maggio alle 13, Sabrina vi aspetterà a Brasilia alle 8, Rebecca invece correrà nelle Channel Island (UK) utilizzando l’applicazione che vi permetterà di partecipare anche se vi troverete in città diverse da quelle scelte dall’organizzazione.

State al nostro fianco, correte/spingete insieme a noi per la cura della paralisi!

Ci vediamo l’8 maggio!!

Cure Girls

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.