RECEIVED HEARTBREAKING NEWS Maddi is just 19 years old! She is a smiley gentle soul and is loved so much by all her family. She came into the world strong and radiant and grew to be an energetic, giggly young lady. But on the 23rd April 2016, our life's changed forever as we received the devastating news that Maddi had a rare form of Motor Neuron Disease called SPG15. As you can imagine, this is the kind of news that brings the entire family to its knees and leaves them fearful for their child’s future. This is an Urgent Appeal as time is running out for Maddi! <img src="https://d2g8igdw686xgo.cloudfront.net/44693738_1578843007479408_r.jpeg" alt="44693738_1578843007479408_r.jpeg" width="100%" media_type="3" /> Maddi was 14 years old when she suddenly developed a limp, with further investigations and an MRI scan, it revealed anomalies in her brain, so she underwent a DNA test at Great Ormond Street Hospital. The Doctors explained that test confirmed a rare motor neuron disorder - SPG15 and told us what Maddi’s future will look like, hearing them say, Severely Disabled, Spastic Paraplegia being confined to a Wheelchair in the early years. They said she could develop Juvenile Parkinson’s as the disease slows down the brain and Degeneration in her eyesight!  These symptoms are compared to a slower version of ALS. There is NO CURE for such a wicked disease. NO parent wants to hear this for their child. <img src="https://d2g8igdw686xgo.cloudfront.net/44693738_1578842818782132_r.jpeg" alt="44693738_1578842818782132_r.jpeg" width="100%" media_type="3" /> SPG15 is a progressive brain disorder that begins in childhood, it is caused by just one missing protein in the Gene. As Maddi doesn’t have this protein, the degeneration has started to progress. SPG15 is a disorder that rips abilities, and then life, away from children and young adults.. It pains me to know that instead of watching my happy girl who once loved to ice skate enjoy life she will gradually regress and become wheelchair bound and lost to this terrible disease.  <img src="https://d2g8igdw686xgo.cloudfront.net/44693738_1578842858466285_r.jpeg" alt="44693738_1578842858466285_r.jpeg" width="100%" media_type="3" /> THERE IS SOME HOPE IF WE CAN RAISE ENOUGH MONEY! Researchers believe an experimental Gene Therapy could cure SPG15, as very recent genetic therapies are able to STOP and even REVERSE other similar genetic diseases.  With SPG15 being so rare – (less than 150  cases diagnosed in the world) – no drug company would put up the money necessary for research and clinical trials. SO the funding needed to take this through to clinical trial is a HUGE amount - £2 MILLION to be precise!! When I realised this, I decided to try and raise the cash myself in a race against time to find a cure for Maddi.  With crowdfunding and the start of a Charity to help secure funds (The Maddi Foundation - Charity Registration 1174374).  This would not have been possible so far without the help of thousands of incredibly kind and generous people around the world so far. But the story doesn't end here... Whilst we have desperately been waiting for a cure Maddi had undergone a surgical procedure at St Louis Children’s Hospital in America called selective dorsal rhizotomy to try and keep her body moving, this helps her to walk a few steps each day without using her wheelchair full-time. We work hard to find ways to rehabilitate her in the meantime. <iframe media_type="0" media_id="CJehvxUofz0" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/CJehvxUofz0/?rel=0" frameborder="0" allowfullscreen="1"></iframe> THE TREATMENT APPROACH Researchers at Sheffield University, UK are already testing this approach on Maddi’s cells (thanks to the donations supporting this so far). OUR GOAL IS TO RAISE £2 MILLION TO SAVE MADDI SO FAR, With the help of crowdfunding, The Maddi Foundation, successful grants and family savings. We have raised in excess of over £400,000 towards the research for a cure and helping Maddi have surgery in America. Despite those donations, the campaign is still less than a quarter of a way there, funding the complex work needs to take this to a clinical trial. THIS IS AN URGENT APPEAL!!!           DO YOU KNOW ANYONE WHO CAN HELP THIS GO VIRAL?  HOW YOU CAN HELP TODAY 1.  GIVE what you can. No donation is too small 2.  SHARE on social media #CureSPG15 #SavingMaddi 3.  EMAIL this page gofundme.com/SavingMaddi   4.  FOR GIFT AID, Please visit the website <a href="http://www.themaddifoundation.com" target="_blank" rel="noreferrer noopener">www.themaddifoundation.com</a>  to Donate with gift aid , thank you. WHERE IS YOUR MONEY GOING? Every penny will go to research being done on SPG15 at Sheffield University and other medical institutions that are helping to find a cure. We are currently racing against time to fund this research, trial and ultimately a cure for all SPG15 children and young adults. WHY SO MUCH MONEY? Medical Research and getting a clinical trial up and running can cost millions of pounds. If we can’t fund it, the clinical trial will not happen! WILL GENE THERAPY FOR SPG15 HELP OTHER DISEASES? Yes treating Maddi’s gene could lead to cures for more common diseases where there are other single genes involved such as Alzheimers and Parkinsons. THERE IS A CLEAR FAST TRACK PATH TO TREATMENT  1. Create a proof of concept  2. Prepare the therapeutic virus carrier 3. Determine the minimal dose required 4. Final Safety Study; 5. Secure licence to start a clinical trial! TIME IS OF THE ESSENCE All efforts made now to help Maddi will be lost if we do not find a cure in time to halt the disease. Please help to give Maddi a brighter future. With Gratitude and thank you from the bottom of our hearts. Message from Maddi  "Thank you so much for your support, lots of love Maddi" xxx

Alessandro Gherzi

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Saving Maddi - CureSPG15

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Saving Maddi - CureSPG15

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