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

Barbara: A real Cure Girl

A few days ago, Barbara published this post about her 30th anniversary of her life on a wheelchair. Read it carefully and maybe you will understand why we are struggling so hard for a cure.

Cure Girl Loredana

Barbara

When I was 12 years old I had already passed my first anniversary in my wheelchair and I couldn’t imagine there would be 29 more. Probably no one imagined that, perhaps the doctors neither, the first white coats I met during these long 30 years said: “There is currently no cure for spinal cord injury, but science may bring promising news in the near future.”

I guess that more or less this was the refrain of many doctors at the end of the Eighties, maybe even my parents were told this. Today, we can say that science has made important discoveries, sometimes even extraordinary. But it’s not enough. Unfortunately, there are so many protagonists involved in a spinal cord injury, and each one has a precise role and is connected to another only in a certain way. To restore all the connections, and thus to make the signals pass through the spinal cord again, every single role needs to be restored. When I was admitted to Montecatone Rehabilitation Hospital, in Imola, Italy, (October 1987), a doctor told my father: “Cases like your daughter, twenty years ago would have been deadly. Today at least we can make people live”. Of course the quality of life is different depending on the type of injury and the severity of paralysis, even if we talk about a pathology that doesn’t result only in paralysis. I can’t describe details in a post, but you can find all the information you need on internet, if you are interested. Here is an example that is worth any reference book. If you are really unlucky, an injury may involve the highest part of the spine.

In the first three cervical vertebrae paralysis involves all four limbs, in addition to the muscles for breathing. You are dependent on a mechanical ventilator as well as for all the activities of daily living. This has happened to Christopher Reeve, the actor who played Superman. He fell from horseback in 1995 and sustained an injury at the first cervical vertebra. Immediately he became a spokesman for all people with sci, struggling to get funds for a cure. In an interview years ago he said: “I want to toast my 50th birthday on my legs!” He celebrated his 50th birthday, but not on his legs, and he was not allowed to postpone for his 60th. He died at 52, nine years after his injury, because of a heart attack, resulting in complications of a pressure sore. And this is one of the “invisible” consequences of a spinal cord injury. Maybe you’re wondering why I talked about Superman in a post on the anniversary of my injury. Because I was one step from his own destiny. Because, although I have a serious motor deficiency, I think there are other thousands of people who would give their soul even just to breathe without that pipe in their throat all day. And this could be possible only if there was a cure. That’s why struggling to support scientific research seems to me the most obvious thing to do. Of course, I am aware that I probably won’t be here anymore when a definitive cure will be found, a cure that makes paralysis due to spinal injuries reversible. But I prefer to help leaving to the next generation a world where those who sustain a spinal cord injury could hear these words: “Don’t worry, now there is a cure and you will walk again soon”.

#nomorepermanentparalysis #curegirls #supportresearch #spinalresearch #wingsforlife #marinaromolionlus

Cure Girl Barbara

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

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!

Schermata 2016-04-02 alle 23.19.54

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).

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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