Cure Girls 3rd Birthday Week- Arcangela’s Story

nuova arcy3 years of the Cure Girls….so proud to be part of this group! We are all women with a spinal cord injury, from different countries, with different stories but the same dream: to have our life back! Thanks to social networking, I found the Cure Girls and wanted to be part of in making our dream a reality. We decided to take part and/or create funding events, go to visit laboratories, and inform people about the realities of living with paralysis. The Cure Girls have been busy … we didn’t want just sit and wait! Before my accident I was happy with my life, it was a normal life but a life where I could decide what to do with it without limits. Everything was exciting….. After the accident everything changed…..In addition to the main problem, the enormous quantity of phisical problems, I have also been forced to face life with many restrictions, as I am no longer free to do what I wanted when and how I wanted……

Arcangela: "I sono una Cure Girl"

Arcangela: “I sono una Cure Girl”

No, this is not a life….Nobody should have to suffer the way paralysed people do (expecially those with high injuries). I want a CURE for chronic spinal cord injury! Only this way will both people already living with a spinal cord injury and the newly injured be able to recover from paralysis and rebuild their lives!

Cure Girl Arcangela

Cure Girls 3rd Birthday Week- Rebecca’s Story

I joined the Cure Girls because I wanted to raise awareness of the need to find a Cure for Spinal Cord Injury, living life in a chair isn’t fun. We need to raise funds and spread the word and also raise as much money as we can to put towards the research to make this cure possible.
I am an identical twin, before my accident I spent all my life with my sister, rebecca 4we did everything together, the same subjects at school, same hobbies and friends and we went off to agricultural college together to learn to teach horse riding and equestrian business management. After qualifying we went on to riding hors es for other people and grooming. It was the best life, we had our own horses too, so we’d be looking after our own, then going off to work and having our own amount of horses to take care of and ride. I loved my job, my friends and all the nights out we all had. Being able to stay out all night, whenever we wanted Hunting, Eventing, Polo and young farmer’s life couldn’t be better. This is what we’d dreamed of. At the age of 22 during a Polo match a horse riding accident so horrific changed my life, split my sister and I in two and ripped me out of the world of horses, my whole life torn to shreds.A spinal cord injury ruins your life, takes the fun out of everything, tears you away from your passions whatever they may be and thrusts you into a horrible life of sitting down, catheters, urine infections, bladder and bowel’s that no longer work, along with your legs, and a life of people talking to you like you’re a child. It’s HELL!!!Rebecca a cavalloWe need a cure so that no more people have to go through what we are living through and ensure people can live the lives they dream of. People need to be aware of the different things we all have to go through, this isn’t just so we can all walk and feel again, there are so many awful things we have to cope with behind closed doors and also the mental torture we all have to try to battle with each day.I don’t want my worst enemy to have a spinal cord injury; it really is hell on earth.Being part of the Cure Girls has given me a purpose, and some loyal friends along the way. We are in many ways like sisters all joined together by life changing events. We are from all around the world and all have different languages but we are all passionate about finding a Cure for Spinal Cord Injury. We do not want anyone to go through what we have to go through daily.If we have to battle for years that is what we’ll do, but we’ll do it together and always remain focused on the Cure.

“Cure Girl Rebecca”

Cure Girls 3rd Birthday Week- Sabrina’s Story

SabrinaI became a Cure Girl after we placed a picture with my friends from Brazil from march 2013, on facebook asking for likes to find a cure to spinal cord injury. I had almost 5000 shares and this was when Loredana saw me we then talked on skype. I then became a member of the Cure Girls team. It was amazing finding girls who think like me, that have suffered the same consequences of spinal cord injury. Our goal is find a cure to paralysis.  I am a kind of free soul. Before my injury I enjoyed spending my time doing sports. I loved my weekends, doing beach running and surfing. Then on may 2008 day I fell off a swing that simulates surf in the air. I was such an athletic girl and within seconds I’m total paralyzed from the shoulders down. We have this mission to find a cure and I will fight for a cure everyday of my life. To be able to take away the dependency on others would be one of the greatest achievements and you can have would bring great happiness to us all. In October 2014, fellow Cure Girl Lolly came to Brazil to visit me and we organized a party to raise money for research. It was a huge success and received a lot of media support. Every year I also support WFLWR (Wings for Life World Run), it is a simultaneously run event around the world and raises money for a cure and where 100% of the funds are given to research.

Join us in this mission! Follow us and support us to find a cure for spinal cord injury. Let’s walk again!

Cure Girl Sabrina

Cure Girls 3rd Birthday Week- Marina’s Story

MarinaI’m Marina Romoli, an ex-professional cyclist and in June 2010 I became paralyzed after an accident during training. I lost my ability to cycle and also all of my professional sporting dreams.

This terrible event, however, did not make me lose the will to live. I decided to do something useful both for myself and for others living with SCI: I decided to dedicate myself to the utmost to find a cure for paralysis. To this end in 2011 my cycling friends and I founded the ‘Marina Romoli onlus’ with the aim of supporting young paralysed athletes who suffer the catastrophic consequences of paralysis. In 2012 I became the president of the ‘Marina Romoli onlus’ and I began to organize events and undertake fundraising for SCI research (www.marinaromolionlus.org).

In this period I met Loredana Longo, the founder of the Cure Girls. She spoke to me about this international coalition of paraysed women who were fighting for a cure for paralysis. I was immediately exited and joined the Cure Girls. The central message of the Cure Girls is very important to me: the only way for paralysed people to be really happy and lead independent lives is to find a cure for paralysis. I strongly believe this and am therefore a real Cure Girl.

Cure Girl Marina

Cure Girls 3rd Birthday Week- Barbara’s Story

barbaraCG 3 bday
I joined the Cure Girls in February 2013 after a difficult period in my life… One of the worst consequences of spinal cord injury occurred and I had a pressure sore, spending the whole of 2012 in bed. The situation made me realise how unbearable it is to depend on others for absolutely everything you need. I sadly realise that only a cure could let me live a life with no fear. So I decided to throw myself into raising awareness of the severe consequences of spinal cord injury and the urgency of finding a cure as soon as possible. After being a quadriplegic for 28 years being Cure Girl was the only choice I could make.
Cure Girl  Barbara

Cure Girls 3rd Birthday Week- Lolly’s Story

I was injured in 2004 after a night out with friends in a London nightclub. I only lost my Father one year before so we were still grieving for him. It was devastating as we were so close. Yes, spinal cord injury happens when you least expect it.
The world was my oyster then.. BOOM! Paralysed at the age of thirty and a ten month stay in hospital was the biggest blow and never thought I’d get through it but thank god for my amazing, loving and supportive family. They gave me the strength to fight this all the way! And when I left hospital that’s what I certainly did. My brother Tony and I threw ourselves into the “CURE” world. cure girl LollyResearching everyday about possible treatments and therapies that could eventually make us walk again. I met a lot of cure “warriors” on the way across the world who I became really good friends with.. Paolo, Harvey, Loredana, Arcangela and Corinne. Then soon after Loredana formed the Cure Girls and asked me to become a member and without hesitation I said yes! At that point I was running my own website (which I still have) and Facebook page to fundraise and promote cure, but I know by working as a team we would make much more of an impact. We certainly have achieved that now! There are eight of us Cure Girls from all over the world and we tell everyone what it’s really like living with a SCI and the same passion for a cure! We’ve become close friends and I call them my Cure Sista’s!  I want my independence back, I want to walk again and do the simple things in life. Everyday is a struggle living with this awful injury. I believe it’s important to live life to the fullest, laugh as much as you can and don’t let anything stop you from doing what you really want to do. I’m lucky to have met the man of my dreams and I’ve got engaged.. Looking forward to the future. But I won’t give up until there is a CURE for paralysis!
Cure Girl Lolly

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