London: The Cure Girls Are Back!

Just as we change, so do the cities. Twenty five years later I returned to the Queen’s land. Since I was last here in my early teens (and I still walked), it was a different city for me.

Sabrina e Lolly a ParigiLondon was an incredible experience for its receptivity, accessibility and intensity. Receptivity because I could feel, since my arrival, how the bonds have grown stronger even at a distance — Lolly, her brothers Tony and Gary and their mother Maureen welcomed me as part of the family we really are. The accessibility made it possible for us to fulfill the really intense schedule we had between pubs, Paris and occasional tourism.

Our first appointment was meeting the incredible staff at Spinal Research’s office and formalise the donation of £1,500 that was collected at Stand Up for a Cure — a party which me and Lolly, representing the Cure Girls, organized in Brazil. Our next step was a visit to the lab _DSC4467of Dr. Liz Bradbury at Kings College, where she talked about her fifteen years of research and search for the healing of spinal cord injuries. We got to see incredible things which she uses in her studies. In the afternoon we went to the UCL lab which outlines another line of research, seeking to treat chronic injuries in humans and is funded by the Nicholls Spinal Injury Foundation. We spoke to Charlotte who is the Finance Manager of NSIF and also the researcher Professor Ying Li and the team. alla nsifWe’re looking forward for the good news in the years to come! On that day I personally met Loredana, my “cure girl sister” from Italy, who was with a team filming the first documentary from the Cure Girls. Hopefully, soon everyone will know even more about the projects and hopes from seven girls around the world fighting for the healing of spinal cord injuries. May the possibility of truly effective treatments for the spinal cord injury arise from this meeting. I’m still dreaming of watching a Rolling Stones concert in Hyde Park — and for this to happen, both Mick & Co. and Cure Girls will need science walking by our sides. “You can’t always get what you want, but if you try sometimes…”

Cure Girl Sabrina

Annunci

Pensieri di una Cure Girl determinata

Qualche giorno fa la nostra Cure Girl Barbara ha pubblicato questo post relativo al suo 30° anniversario di vita in sedia a rotelle. Leggetelo con molta attenzione e forse capirete per quale motivo lottiamo così fortemente per una cura.

Cure Girl Loredana

Barbara

13 agosto 1987 – 13 agosto 2017

Ufficialmente si fa terminare il periodo dell’infanzia a 12 anni.
Quando ho compiuto 12 anni avevo già superato il mio primo anniversario sulla sedia a rotelle e, ovviamente, non potevo immaginare che ce ne sarebbero stati altri 29.
Probabilmente nessuno lo immaginava, forse neppure i medici, i primi camici bianchi che ho incontrato durante questo lungo periodo.
“Al momento non esiste una cura per le lesioni spinali, ma può darsi che nel prossimo futuro la scienza ci porti notizie incoraggianti”.
Immagino che, più o meno, questo riuscivano a dire i dottori agli sgoccioli degli anni Ottanta; e forse è ciò che è stato detto anche ai miei genitori.
Oggi possiamo dire che la scienza ha fatto scoperte sì incoraggianti e, a tratti, anche straordinarie. Ma ancora non ci siamo.
Purtroppo sono tanti i protagonisti coinvolti in una lesione spinale, e ognuno ha un suo ruolo preciso ed è collegato a un altro soltanto in un determinato modo. Per ripristinare tutti i collegamenti, e permettere così di riattivare la circolazione dei segnali, bisogna ridare ad ognuno il proprio ruolo.
Quando entrai la prima volta nel centro di riabilitazione di Montecatone, a Imola (ottobre 1987), un dottore disse a mio padre: “I casi come sua figlia, vent’anni
fa, sarebbero stati mortali. Oggi almeno riusciamo a far vivere le persone”.
La qualità della vita poi varia a seconda del tipo di lesione e della gravità della paralisi; anche se parliamo di una patologia che non ha come conseguenza solo la paralisi.
Non si può descrivere tutto in un post, ma i mezzi per informarsi ci sono, per chi è interessato.
Qui riporto un esempio che vale un’intera enciclopedia. Se si è davvero sfortunati, una lesione può coinvolgere la parte più alta della colonna vertebrale. Nelle prime tre vertebre cervicali la paralisi coinvolge tutti e quattro gli arti, oltre i muscoli per la respirazione. Si è dipendenti da una macchina per respirare, oltre che per tutte le attività della vita quotidiana.
Questo è capitato a Christopher Reeve, l’attore interprete di Superman.
Cadde da cavallo nel 1995 riportando una lesione alla prima vertebra cervicale.
Si è fatto subito portavoce di tutte le persone mielolese, battendosi per ottenere fondi per la ricerca di una cura.
In un’intervista anni fa disse: “Voglio brindare ai miei 50 anni sulle mie gambe”!
I 50 anni li festeggiò, ma non sulle sue gambe, e non gli fu concesso di rimandare magari ai 60 anni. Morì a 52 anni, nove anni dopo la lesione spinale, a causa di un attacco cardiaco, conseguente a complicazioni di un’ulcera da pressione.
Ecco, questa è una delle conseguenze “invisibili” di una lesione spinale.
Forse vi state chiedendo perché ho parlato di Superman in un post sull’anniversario della mia lesione. Perché sono stata a un passo dal suo stesso destino. Perché, nonostante abbia io stessa un grave deficit motorio, penso che ci sono altre migliaia di persone che darebbero l’anima anche solo per respirare senza quel tubo piantato nella gola tutto il giorno. E questo potrebbero farlo soltanto se ci fosse una cura. Perciò lottare per sostenere la ricerca scientifica mi sembra la cosa più ovvia da fare. Certo, sono consapevole che probabilmente non sarò più qui quando arriverà una cura definitiva che renda reversibile la paralisi dovuta alle lesioni spinali.
Ma preferisco contribuire a lasciare alle prossime generazioni un mondo in cui chi subisce una lesione spinale possa sentirsi dire:
“Non si preoccupi, ora abbiamo una cura e presto ritornerà a camminare”.

The Cure Map

What you will see here is an extended trailer of “The Cure Map” documentary being done by Kelsey Peterson and Madeline Brown

Two women and a dog hit the open road, camera in hand and documentary in the making, in search of answers that bring us closer to a cure for paralysis.

We think this is a very brave initiative as we all would like to know how close are we to a cure and how to make it happen as soon as possible.

We understand how difficult it is to make this journey for a person living with paralysis without even the support of a Spinal Cord Injury organization.

We are confident that this effort will have in the end a positive impact on research for a cure for Chronic Spinal Cord Injury.

You can follow the progress of this project on their FB page

We look forward to watch the whole documentary and wish Kelsey and Madeline to make history with their journey!

 

Cure Girl Loredana

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

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

Settimane ricche di impegni per le Cure Girls!

1gruppocenaRieccoci! Sono state settimane di fuoco per le Cure Girls italiane impegnate negli annuali eventi di raccolta fondi e di sensibilizzazione organizzati dall’associazione Marina Romoli Onlus.

Il 5 e 6 novembre è andata in scena la seconda edizione di Ottobiano Sport Show for Marina Romoli Onlus. L’evento anche quest’anno ha visto la partecipazione di grandi nomi dello sport e dello spettacolo tutti uniti per sostenere la ricerca di una cura per la paralisi (vedi foto cliccando qui).

Il tema dell’evento è stato “Praticate sport in sicurezza” perché purtroppo gli incidenti sportivi sono una delle maggiori cause di lesione spinale e quindi abbiamo pensato che parlare di prevenzione potesse servire per far conoscere meglio il problema e allo stesso tempo per far capire la necessità di risolverlo.

Per riuscire nell’intento siamo state anche nelle scuole medie del territorio e speriamo che quanto spiegato serva ai ragazzi e li aiuti a prestare sempre la massima attenzione a ciò che fanno e a come lo fanno in modo che si possano prevenire incidenti evitabili.

La settimana successiva invece ha visto le cure girls impegnate ad Eicma Esposizione internazionale Ciclo e Motociclo (vedi foto). eicma-2016Siamo state ospiti dello stand di Ottobiano Motorsports ed abbiamo potuto rincontrare i campioni testimonial delle nostre iniziative e allo stesso tempo ringraziare tutti quelli che lavorano dietro le quinte di questi grandi eventi che ci permetteranno anche quest’anno di supportare un importante progetto di ricerca che tra qualche settimana vi illustreremo.

Le Cure Girls colgono l’occasione per ringraziare di cuore tutti quelli che ci stanno permettendo di portare avanti il nostro obiettivo: La lesione spinale cronica deve diventare curabile! All Together We Can Do It!

Con affetto

Cure Girl Loredana

 

L’Huffington Post parla della paralisi e delle Cure Girls

Un bellissimo articolo di Samantha Walsh pubblicato sull’Huffington Post dal titolo “Reflecting on Paralysis: The Cure Girls” (Riflettendo sulla Paralisi: le Cure Girls Clicca qui per leggere l’intero articolo in inglese) ha descritto in modo chiarissimo come le conseguenze della lesione spinale rendano ridicoli certi problemi della vita quotidiana di molte persone.

In particolare nella parte iniziale Samantha scrive: “Quando guardi nello specchio cosa vedi?  Una ruga… un naso imperfetto… una macchia della pelle sul mento? In questa era di perfezione aerografata e di social media sapientemente filtrati è facile essere autocritici comparando il proprio look, la propria ricchezza, il proprio successo e la propria vita in genere a quella degli altri…Ma supponiamo che tu guardassi nello specchio e vedessi una donna in sedia a rotelle che ti guarda, faresti ancora attenzione a quella macchia sul tuo mento o piuttosto penseresti al fatto che nn sei più in grado di alzarti e camminare?”Ecco che improvvisamente le piccole imperfezioni fisiche di cui molte persone si preoccupano guardandosi allo specchio non hanno più nessuna importanza.Questa è la realtà di 2.5 milioni di persone nel mondo.

Poi l’articolo continua parlando delle Cure Girls che non hanno accettato questo destino perché la ricerca scientifica ha già fatto notevoli progressi verso la cura e quindi hanno deciso di impegnarsi a sostegno di quei ricercatori che stanno lavorando per trovare una CURA per la paralisi . 

L’articolo si conclude dicendo che recentemente le Cure Girls hanno inoltre fatto un servizio fotografico con lo scopo di attirare l’attenzione su di sé, non per mostrare la loro bellezza, ma per poter far sapere a quante più persone possibili che ciò che vogliono più di ogni altra cosa al mondo è poter tornare a camminare!