The Cure Girls took part at the 4rd edition of the Wings For Life World Run

Lolly Mack WFLWR in Milan 2017I’m back in London and still absolutely buzzing after attending the Wings For Life World Run in Milan! I met up with my Cure Girls Loredana, Arcangela & Marina along with our 40 strong Cure Girls Team who were running & pushing for a cure for paralysis. The Cure Girl Sabrina took part in Brasilia!

It’s a worldwide run which takes place simultaneously in 33 countries and 100% of the entry fee goes to spinal cord injury research. (111 locations, 155,288 participants and 1,431 183km covered)

For me it’s really emotional seeing everyone taking part in such a huge event for such an important cause which funds research to get people like me and 3 million others OUT of wheelchairs.10k WFLWR 2017 Cure Girls in Milano

The atmosphere in Milan was just amazing, and it makes me so proud to be working alongside my fellow Cure Girls… All of us with the same passion and determination to fight for a cure!

The Cure Girls wants to thank all the supporters!

See you soon!

Cure Girl Lolly

Click here to see pictures of our participation . For more photos and videos of the Cure Girls check out the Cure Girls YouTube channel!

Wings For Life World Run 2017 – The Cure Girls Push for a Cure!

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Just a few weeks to the fourth edition of the Wings for Life World Run!

The Cure Girls will partecipate (click here to see pictures of our participation in the last editions). The World Run is a big global event to raise money and awareness for research to cure paralysis and for the third time we have decided to support this event. We created the Cure Girls Team, now we have already more than 30 people in the team (many more will join us in the coming days).

Our goal is to spread loudly an important message: “Chronic Spinal Cord Injury Must Become Curable”! You can help us by registering for the World Run and then joining our team! All you need to do is to go to the Wings for Life World Run web site and register for the race. Run for those who can’t! 100% of the registration fee will go directly to spinal cord injury research. come iscriversi al cg teamThen to join the Cure Girls Team, after the registration, you can click here and follow the instructions. Add the e-mail address that you used to register and click “Join this Team”, It is also necessary to access at the link that will be sent to you by e-mail, move the “gray” button from left to right until it turns blue, then confirm that you want to be part of our team by clicking “close.” The Cure Girls  will be waiting for you in Piazza Castello in Milan on May 7th at 13:00 and in Brasilia at 8:00 (local time).

Stay with us! Run / push with us to Cure paralysis!

See you on May 7!

Cure Girls

Promoting safe participation in sport activities to prevent paralysis

By Marina Romoli Onlus Association

The Marina Romoli Onlus Association has been meeting students from primary schools to promote safe participation in sports and in particular to raise awareness about the consequences of Spinal Cord Injury, how to prevent it and how to help finding a cure.

On February 24th 2017 Loredana Longo, Vice President of Marina Romoli Onlus Association, has met students from the primary school of Garlasco (Pavia – Italy) together with Igor Cassina , (Italian gymnast who won gold in the men’s horizontal bar at the 2004 Summer Olympics in Athens), Max Verderosa (top rider of the Supermoto World Championship) and Mike Maric (Free Diving World Recordman).


Loredana Longo told the students about the Cure Girls and how each of them became paralyzed due to Spinal Cord Injury and what the Marina Romoli Onlus Association and all the Cure Girls are doing to help finding a cure for paralysis.

Igor Cassina, Max Verderosa and Mike Maric have explained the students how to practice sport safely sharing their experience to avoid accidents that may cause serious consequences such as Spinal Cord Injury.

All children have shown great attention to what we have told them and asked many questions to learn as much as possible from our ambassadors.

The meeting has been very successful and we are confident these children will practice sports more safely for the rest of their life and will support Marina Romoli Onlus Association to help finding a cure for paralysis!

More info

Cure Girls sponsor a collaboration between two prestigious US universities

cg-and-prof-silver02/10/2017 Cure Girls sponsor a collaboration between two prestigious US universities

As a result of the meetings the Cure Girls had in London in September 2016 The Marina Romoli Onlus Association (MROA) is now sponsoring a new collaborative research project between Case Western Reserve University (CWRU) and The Ohio State University (OSU). The total contribution has been of $50.000 ($25.000 for CWRU and $25.000 for OSU).

The title of the project is:Promoting functional reorganization in the injured spinal cord using a combinatorial strategy to maximize recovery”

The Research will be supervised by Prof. Jerry Silver, principal investigator for CWRU and Dr. Andrea Tedeschi, principal investigator for OSU. dr-andrea-tedeschiThis research project, if successful, will bring us much closer to finding therapies to reverse both acute and Chronic Spinal Cord Injury. For more details about the research project see the abstract below. 

MROA wants to thank all the supporters, in particular the association named “RIIM” that made a contribution to MROA to fund half project.

“It is an honor for MROA to sponsor a collaboration between these two very prestigious US Universities and we wish the best of luck to both Prof. Silver and Dr. Tedeschi!” 
Marina Romoli – President of  MRO

About Marina Romoli Onlus Association:

The Marina Romoli Onlus Association was created in 2011 when the professional cyclist Maria Romoli became paraplegic after she was hit by a car during a training session. The association has the goal to support medical research to find a cure for chronic spinal cord injury and to provide financial support to athletes that become disabled practicing sport activities, in particular to the ones who become paralyzed due to spinal cord injury.                                                                           

Project Abstract                                                                                    

Problem: Injuries to the spinal cord disrupt ascending as well as several descending axonal tracts, ultimately leading to both sensory and motor impairment.                                                                                      

Target: Promoting functional reorganization in the injured spinal cord using a combinatorial strategy to maximize recovery.

Goal: Assessing the therapeutic efficacy of combining intracellular sigma peptide with Pregabalin.

Injuries to the adult mammalian central nervous system (CNS) cause devastating long-term sensory, motor and cognitive disabilities due to limited sprouting and axon regeneration failure. No therapeutic strategy that restores function is currently available for individuals that have suffered damage to their spinal cords. Over the last few decades, a considerable amount of research has been devoted to investigating the cellular and molecular mechanisms controlling axon growth and regeneration failure. A number of studies have demonstrated that the presence of a non- permissive environment and the poor intrinsic growth potential of most CNS neurons accounts for regeneration failure and lack of functional recovery in the adult. One intriguing hypothesis that helps explain regeneration failure especially at chronic time points after injury is that the tips of severed axons (so-called dystrophic endballs) form synaptic-like connections with glial precursor cells within the lesion penumbra which entraps them indefinitely (Filous et al., 2014). We will need to release this ”brake” and overcome other extrinsic and intrinsic barriers simultaneously in order to maximize any potential for functional regeneration. Thus, one single strategy is unlikely to fully repair the damaged CNS. Spatial and temporal arrangement of neuronal extrinsic and intrinsic mechanisms is crucial for the development of strategies aimed at creating more favorable conditions for functional recovery.

By decreasing interaction with CSPG-rich substrates, one of the major extrinsic barriers to regeneration, administration of a membrane-permeable peptide (Intracellular Sigma Peptide: ISP) that binds and inactivates protein tyrosine phosphatase σ (PTPσ) has allowed substantial recovery in rats after severe spinal cord contusion injury (Lang et al., 2015). Extensive sprouting of serotonergic fibers below the site of injury correlated with functional recovery in these animals (Lang et al., 2015). In vitro studies showed that ISP also has a dramatic effect on adult sensory neurons, which resulted in their ability to regenerate past a potently inhibitory CSPG barrier. However, the effect of ISP on sensory axon regeneration in vivo after SCI has not yet been investigated. Pregabalin (PGB), a potent gabapentinoid commonly used to treat neuropathic pain after SCI, has been recently shown to promote robust regeneration of ascending sensory axons in adult mice after SCI by blocking Alpha2delta2, a neuronal receptor and critical component of the intrinsic molecular “brake” of axon growth and regeneration (Tedeschi et al., 2016).

The goal of the proposed study is to assess the potential for strong therapeutic synergy by combining intracellular sigma peptide with Pregabalin to maximize structural and functional reorganization in acute but especially chronic experimental models of SCI. If successful, this study may have significant impact on the design of clinical interventions aimed at promoting neurological recovery in SCI individuals.

Cure Girl Loredana


Thank You Professor Raisman – R.I.P.

Cure Girls at NSIFToday it’s a very sad day for the Cure Girls and all people living with paralysis caused by spinal cord injury (SCI), because we have learned that Prof. Geoffrey Raisman passed away on Friday 27 January 2017. Read More

Our thoughts are with his wife and family at this time.

I have met prof. Raisman together with other Cure Girls in January 2015 as reported here

Prof. Raisman has dedicated his whole research career to find a cure for SCI. He was crazy enough to believe a cure was possible when it really seemed impossible to cure paralysis. Just for that he should be remembered as a hero and deserve our eternal gratitude.

I am sure his name will have a place in history books of medical research.

Prof. Raisman was a world class scientist and we have lost a great inspiration, his tremendous work and the team that he has developed at University College London (UCL) now led by Professor Ying Li and Dr Daqing Li will ensure his legacy remains.

His discoveries will not be lost as his team will continue his brilliant work.

Thank you prof. Raisman, Rest In Peace.

Cure Girl Loredana


Cure Girl Lolly Cycles 300 miles & on a 3 month alcohol ban for NSIF

On Thursday 19th January 2017 I completed my 4th virtual cycle to raise money for a cure for paralysis.

I decided to set myself the toughest challenge yet by not only cycling the furthest distance I’ve ever cycled but also to make the challenge even more difficult by going on a 3 month alcohol ban too! The way I look at it if it’s not really that difficult then it’s not a proper challenge! Plus I suppose I’m a sucker for punishment! Lol. I really wanted to raise as much money as I possibly could for the Nicholls Spinal Injury Foundation who fund the vital research on chronic spinal cord injury in Poland at the moment by Professor Raisman and the team.
I was delighted to have finished my 300 mile cycle (equivalent distance from Rome to Cannes) in 12 days, beating all my previous cycling records! I managed to raise over £2,500 for the charity and have officially cycled 1,138 miles for a cure and also raised over £8,000 in my virtual cycles alone!

I am just coming up for being 1 month booze free so I still have another 2 months to go!!! Eeeekkkkk!!! My justgiving page is still open and will be for a while so if you can spare a sponsor I’d be so grateful.

I am so touched by everyone’s generosity so far and all of my lovely messages of support. I really couldn’t do this without you amazing people! I’ll carry on doing everything I possibly can by fundraising and raising awareness for a cure for chronic spinal cord injury! #teamnevergiveup

Cure Girl Lolly

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