Cure Girl Lolly’s Interview on BBC Radio London

Posted on 16 gennaio 2016 by Cure Girls

Cure Girl Lolly

On Wednesday 13th January I was absolutely delighted to be invited along to BBC Radio London to have an interview with the brilliant Eddie Nestor on his Drivetime Show.
Eddie talks about serious topics/issues and peoples views in London and I was nervous but excited to speak about my story, latest fundraiser and the Cure Girls mission “live” on the radio!
Dr Mark Bacon, Executive Clinical Director of Spinal Research also accompanied me and spoke about the fact that the charity isn’t government funded, the statistics of people living with a spinal cord injury in the UK and also the complex issue of a cure.

I mentioned my latest challenge which is a 285 mile virtual London to Paris cycle on my FES bike to raise as much money as I can for Spinal Research. This was a great opportunity and I’ve had lots of messages of support from lovely people and some donations which have been amazing.
You can still listen to the interview here: http://www.bbc.co.uk/programmes/p03cnh9n#play and using the slider go to 2 hours and 6 minutes.

Cure Girl Lolly.

You can still sponsor me, I’m on Day 5 of my challenge and I’ve cycled 115 miles so far. Please go to www.justgiving.com/Lorraine-Mack5 all donations could potentially get people out of wheelchairs!

Thanks so much!

The Cure Girls support Nicholls Spinal Injury Foundation (NSIF)

Posted on 30 marzo 2015 by Cure Girls

After our visit to the UK-based charity in January 2015 (see the blog) the Cure Girls Lolly, Marina and Loredana have decided to support NSIF.

Cure Girl Lolly

Lolly has just cycled 282 miles which is the equivalent distance from London to Newcastle to raise money for NSIF. On March 21st Lolly said: “I finally did it! Day 17, I’ve just cycled 282 miles which is the equivalent distance of London to Newcastle!! So happy! Whoop! Still can’t celebrate yet as still on my chocolate and alcohol ban for March! it’s still not too late to sponsor me on www.justgiving.com/Lorraine-Mack1 as my story is about to go on TV and online soon so will be keeping my page open”.

Marina and Loredana (president and vice president of “Marina Romoli Onlus (MRO) – a non profit organization created by Marina to raise money for cure research) after the meeting with NSIF and prof. Raisman have shared all they have learned at the meeting with the board of MRO and come to the decision to donate 70000€ to NSIF. “In the last few years I have been following SCI research and I have realized that most research in this field focus on finding therapies that work only on acute SCI (within a few days after injury). Unfortunately in people living with SCI the lesion has become “chronic” which requires a different approach to achieve functional recovery. I want topoint out also that the goal of Marina Romoli Onlus (MRO) is a biological cure, not compensatory devices such as robotic legs.

MRO BOARD – Loredana Longo, Giulia De Maio, Marina Romoli

For that to happen it is essential to achieve regeneration of the nerve fibers in the chronically damaged spinal cord. The line of research of prof. Raisman and dr. Tabakow, both supported by Nsif, focus on regeneration of the nerve fibers and it is applicable to chronic SCI as shown for the first time by the functional recovery achieved by Darek Fridyka that has been scientifically documented. After our meeting in January 2015 I have shared all these considerations with the board members of MRO and we have concluded to make this donation to Nsif” said Marina.

The Cure Girls meet with Prof Raisman and Nicholls Spinal Injury Foundation

“We are incredibly grateful to Marina for this donation. We are at a crucial time currently with the research we are funding. Every donation is vital in helping the scientists turn their innovative work into a treatment for spinal cord injury,” said Mike Milner, CEO, nsif.

For more information visit the website

Cure Girls

Meeting delle Cure Girls con la Nicholls Foundation ed il prof. Raisman

Posted on 1 febbraio 2015 by Cure Girls

Il 27 gennaio 2015 le Cure Girls italiane Loredana e Marina e le Cure Girls inglesi Lolly e Ruth sono state a Londra per incontrare i vertici della Nicholls Foundation (NSIF) ed il prof. Geoffrey Raisman. Per la NSIF erano presenti l’amministratore delegato Mike Milner e Alice Crookenden membro dello staff della NSIF. Chi segue il blog delle Cure Girls ricorda sicuramente che, nell’ottobre 2014, il prof. Geoffrey Raisman ed il dr. Pawel Tabakow hanno pubblicato i risultati di uno studio clinico riguardante un paziente con lesione spinale cronica che ha recuperato alcune funzioni motorie e sensoriali a seguito di un intervento chirurgico. Da allora la NSIF si è fortemente attivata per raccogliere i fondi necessari a far progredire questa linea di ricerca. L’obiettivo è di raccogliere i 10 milioni di sterline necessari per sviluppare questa linea di ricerca del prof. Raisman ed il suo gruppo. Ma a cosa serviranno questi soldi? Prima di tutto nel 2015 si intende iniziare a trattare altri 10 pazienti con lo scopo di confermare i risultati osservati sul primo. Una volta ottenute le necessarie autorizzazioni, l’intenzione sarebbe quella di trattare 5 pazienti in un centro nel Regno Unito e altri 5 in Polonia. Ci vorranno alcuni anni per trattare questi pazienti che per essere arruolati nello studio clinico, dovranno presentare una lesione provocata da un taglio del midollo spinale (cosa piuttosto rara). L’intervento chirurgico è un’intervento molto invasivo inquanto prevede la rimozione di uno dei due bulbi olfattivi. Attualmente il Dr. Pavel Tabakow sta esercitandosi su dei cadaveri per sviluppare una tecnica di intervento il meno invasiva possibile che gli permetta di prelevare le cellule da uno dei due bulbi olfattivi. Allo stesso tempo il prof. Raisman ed il suo team stanno lavorando per trovare cellule efficaci come quelle del bulbo olfattivo, ma ottenute da altre fonti in modo molto meno invasivo per il paziente in modo da evitare la rimozione del bulbo. Una delle principali critiche di questa linea di ricerca è che si focalizza sulla lesione midollare da taglio, che è molto rara, invece che sulla lesione contusiva che è molto più comune nei pazienti. Per comprendere le ragioni di questa scelta è necessario valutare i “pro e contro” della lesione da taglio. In questa fase il gruppo di ricercatori intende dimostrare che il recupero funzionale osservato nel paziente Darek Fidyka è dovuto alla rigenerazione delle fibre nervose invece che alla cosi detta “plasticità neuronale” che consiste solo in una riorganizzazione di connessioni nervose sopravvissute al trauma.

La lesione da taglio è quella che meglio si presta per questo scopo. Quindi questo studio non ha lo scopo di dimostrate che la rigenerazione è possibile nella lesione spinale contusiva, ma quello di dimostrare che la rigenerazione è possibile dopo una lesione spinale cronica in genere. Ciò rappresenta il primo passo indispensabile per arrivare ad una terapia efficace anche per le lesioni contusive che sono la maggior parte delle lesioni spinali.

In questo momento il problema principale è trovare i fondi necessari per continuare la sperimentazione sui pazienti e possibilmente trovare una migliore fonte di cellule efficaci al posto di quelle prelevate dal bulbo olfattivo.

Cure Girls

The Cure Girls meet with Prof Raisman and Nicholls Spinal Injury Foundation

Posted on 1 febbraio 2015 by Cure Girls

In the London offices of the Nicholls Spinal Injury Foundation (NSIF) on a cold January afternoon, the Cure Girls met with Prof. Raisman, NSIF acting CEO Mike Milner and NSIF staff member Alice Crookenden. Regulars to the blog will remember that it was Prof Raisman and Dr Pawel Tabakow who published ground breaking research in October showing regeneration of the spinal cord using olfactory ensheathing cells (OECs). NSIF are currently undertaking extensive fundraising to ensure this research can progress. They are aiming to raise £10m which is to be used exclusively by Raisman and his team. So, how is this money to be used and how do they plan to move this research forward? Replication of the initial results is the primary step and is due to start this year. Depending upon regulatory approval within the UK, replication studies will take place in both the UK and Poland.Prof Raisman suggests that 5 people would be required for each study. OECs are harvested from the olfactory bulb which is located within the brain. Surgery to harvest the cells is invasive, potentially dangerous and expensive but Dr Pawel is already working on cadavers to simplify the surgical removal of the olfactory bulb. At the same time Prof. Raisman and his team are working to find a different source of cells which are easier to harvest and as effective as OECs. The hope is that in the future the removal of the olfactory bulb will not be necessary. One of the major criticisms of this research is that it focusses on a rare injury model – the transected cord, rather than the contused cord. To understand why this research has not been designed around contusion type injuries, we have to understand the pros and cons of the transection model. The team of researchers wanted to show beyond a doubt that the recovery seen in the well documented patient, Darek Fidyka, was from regeneration and not from plasticity. The transection model was ideal for this. It’s important to grasp that this research was not aimed at proving regeneration in contusion type injuries; it aimed to prove that regeneration is possible. Therefore the researchers chose the most appropriate injury model to prove this. Once the replication study has been accomplished, the surgery technique will need to be adjusted to contusion type injuries. Moving forward there are multiple challenges, not least raising sufficient funds to commence replication tests and to continue the search for more effective cells.