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

Annunci

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

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.

#‎WalkingWednesday‬

Walking Wednesday

August 12th 2015 saw the launch of an exciting new Cure Girls’ initiative. It’s called #WalkingWednesday.
It’s an international campaign and the goal is to raise awareness and funds to find a cure for paralysis caused by chronic spinal cord injury.
To participate in this campaign is very very, easy. Every Wednesday, simply use social media to post a photo of yourself before your spinal cord injury (SCI). Then we’ll share your picture on the #walkingwednesday FB page and in order to make it visible to everybody we ask you to set the privacy setting of the picture on “public”. Ask all your SCI contacts to do the same!
In order to give meaning to this campaign, we’re asking participants to include in their #WalkingWednesday post information about organisations that are working hard to get us out of wheelchairs.

Here are some suggestions of organisations that doing great work; please remember to add to your post!
Endparalysis Foundation http://endparalysis.org
Marina Romoli Onlus http://www.marinaromolionlus.org
Nicholls Spinal Cord Injury Foundation http://www.nsif.org.uk
Spinal Research http://www.spinal-research.org
Unite 2 Fight Paralysis http://www.u2fp.org

The Cure Girls want to reach as many people as possible so be sure to invite all your non SCI contacts to share your status. Don’t forget: #WalkingWednesday #CureGirls

Many thanks,
The Cure Girls.

#‎WalkingWednesday‬: Come partecipare alla nuova campagna di sensibilizzazione delle Cure Girls

Walking Wednesday

Il 12 agosto 2015 è partita la nuova campagna internazionale delle Cure Girls. L’intento è quello di sfruttare la visibilità che offrono i social media per sensibilizzare sull’urgenza di trovare presto una cura per la paralisi e raccogliere fondi da destinare ai ricercatori che perseguono questo obiettivo.

Partecipare a questa campagna è molto semplice, infatti è sufficiente ogni mercoledì postare su facebook e sugli altri social in cui si ha un account una propria foto prima della lesione midollare e nello spazio dedicato alla descrizione dell’immagine:

  1. Invitare tutti le persone con Lesione spinale a fare lo stesso;
  2. Invitare i propri contatti a supportare una fondazione/associazione che finanzia la ricerca medica per trovare una cura per la lesione spinale cronica, ad esempio per l’Italia l’associazione Marina Romoli Onlus;
  3. Invitare tutti i contatti senza lesione midollare a condividere il tuo stato;
  4. Ricordarsi di impostare il livello di privacy delle immagini su “pubblico” per fare in modo che le foto siano visibili a chiunque visiti il vostro profilo online;
  5. Aggiungere gli hashtag #WalkingWednesday #CureGirls #MarinaRomoliOnlus in modo che si possano conteggiare il numero di adesioni all’iniziativa.

Le vostre foto verrano ricondivise sulla nuova pagina FB delle Cure Girls dedicata a questa iniziativa https://www.facebook.com/WalkingWednesdayCureGirls  

La campagna continuerà a tempo indeterminato ed è importante partecipare tutti i mercoledì finchè non si troverà una cura per la lesione spinale cronica!

Grazie per il vostro sostegno!

Cure Girls

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

Rebecca in visita al Project Walk di Orlando

Quest’anno mentre ero in vacanza con la mia famiglia ho deciso di andare a visitare il centro di riabilitazione “Project Walk” di Orlando (Florida).

1 Project Walk OrlandoVolevo vedere che tipo di riabilitazione utilizzassero per aiutare le persone a rimettersi nuovamente in piedi. Seguivo infatti da qualche tempo il Project Walk tramite le notizie che apparivano principalmente on line e su Facebook e sono sempre stata interessata a capire cosa facessero davvero.

Essendo paraplegica infatti non vedo l’ora di imparare tutto ciò che può aiutarmi a tornare di nuovo come ero. A Project Walk ho trovato un clima molto incoraggiante. Ero sbalordita guardando alcuni pazienti mentre facevano esercizi che credevo, visto il tipo di lesione, non saremmo mai stati in grado di fare di nuovo, mi è sembrato semplicemente fantastico!! Il Project Walk da alle persone con Lesione Spinale speranza di recuperare utilizzando principalmente l’elettrostimolazione esterna  per promuovere la riorganizzazione del sistema nervoso in modo da far ricordare ai nervi e ai muscoli come lavorare di nuovo.3

Gli spasmi muscolari vengono utilizzati per costruire massa muscolare in modo che giochino a favore piuttosto che contro di noi.  Inoltre utilizzano un sacco di esercizi a carico naturale o con pesi leggeri e a resistenza elastica; questo di per sé favorisce la salute delle ossa. Naturalmente non dicono alle persone che saranno in grado di saltare fuori dalla sedia e uscire fuori dalla porta, ma sostengono che nel migliore dei casi il paziente sarà in grado di recuperare delle funzioni e continuare a migliorare grazie agli esercizi che permetteranno di aiutare il corpo a ricordare come muoversi.

Nei casi peggiori il paziente lascerà il centro avendo acquisito maggiore “indipendenza” perché avrà imparato ad usare al meglio le funzioni motorie residue. I benefici per la salute che si possono ottenere sono grandi e questo è qualcosa che è davvero necessario per una persona con lesione spinale.

I risultati che dicono di aver ottenuto sono:

  • Maggiore attività del sistema nervoso centrale
  • Aumento della massa muscolare
  • Aumento della circolazione
  • Aumento della sensibilità in alcuni pazienti
  • Maggiore percezione del caldo e del freddo in alcuni pazienti
  • Maggiore controllo della vita
  • Diminuzione dell’insorgere di piaghe da decubito
  • Diminuzione dell’uso di farmaci
  • Diminuzione di problemi di salute associati ad una lesione del midollo spinale
  • Speranza

2 Project Walk OrlandoQuindi questo tipo di terapia può essere un  vantaggio di tutti noi. E’ ovvio che non è una cura per la paralisi purtroppo, ma è un ottimo modo per mantenere il nostro corpo in forma, nell’attesa che i ricercatori ci diano la notizia che aspettiamo da tempo.

Come Cure Girl credo che tutti dovremmo avere la possibilità di poter accedere a questo tipo di riabilitazione per poter capire se abbiamo ancora margini di miglioramento e mantenere il nostro corpo in forma.

Vorrei ringraziare Lisa, Amanda e Brock per avere permesso a me e alla mia famiglia di visitare Project Walk.

Ci tornerò sicuramente.

Cure Girl Rebecca

Per maggiori info: http://projectwalk.com