BEGIN:VCALENDAR VERSION:2.0 PRODID:-//The Maddi Foundation - ECPv5.0.3.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:The Maddi Foundation X-ORIGINAL-URL: X-WR-CALDESC:Events for The Maddi Foundation BEGIN:VTIMEZONE TZID:Europe/London BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20180325T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20181028T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20190331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20191027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20200329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20201025T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/London:20200717T000000 DTEND;TZID=Europe/London:20200731T170000 DTSTAMP:20240305T084400 CREATED:20200710T090228Z LAST-MODIFIED:20200724T111155Z SUMMARY:Move 4 Maddi DESCRIPTION:\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Move 4 Maddi Want to engage with the wider community (albeit virtually) and be involved in an upbeat and inspiring challenge? Look no further – #move4maddi has you covered! \nWherever you are in the world\, join us remotely between Friday 17th July 2020 – Friday 31st July 2020 to participate in our #move4maddi 5k or 10k challenge in support of The Maddi Foundation. \n80% of all proceeds will go to The Maddi Foundation\, a registered UK charity set up in 2017 after Maddi was diagnosed with a rare form of motor neurone disease – Spastic Paraplegia Type 15 (SPG15) at 15 years of age. Maddi’s best hope for beating this ultra-rare disease is a gene therapy which the Foundation is funding. \nWhether you walk it\, jog it\, run it\, or bike it – it is completely up to you! All finishers will receive a bespoke digital certificate. In addition\, we would love to see your selfies on social media\, so please feel free to upload your selfies using the hashtags #move4maddi and #TeamMaddi. \n Sign up today\n \n \n \n \n \n \n \n \n \n \n URL: CATEGORIES:Fundraising,Sporting event ATTACH;FMTTYPE=image/jpeg: END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20200404T190000 DTEND;TZID=Europe/London:20200404T230000 DTSTAMP:20240305T084400 CREATED:20200311T150032Z LAST-MODIFIED:20200316T103900Z SUMMARY:60s Rock Night DESCRIPTION:Doors open at 7pm.\nTickets £10 each includes a Buffet. \nPlease contact Andrew on 07527142761 for tickets or visit Saffron Walden Tourist Information. \nAll proceeds go to The Maddi Foundation to help towards a cure for SPG15. \n URL: LOCATION:Saffron Walden Bowls Club\, Abbey Lane\, Saffron Walden\, Essex\, CB10 1DG\, United Kingdom CATEGORIES:Fundraising ATTACH;FMTTYPE=image/png: END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20191109T190000 DTEND;TZID=Europe/London:20191110T010000 DTSTAMP:20240305T084400 CREATED:20200311T141300Z LAST-MODIFIED:20200316T103942Z SUMMARY:The Autumn Ball 2019 DESCRIPTION:We are really excited to announce that tickets are now on sale for our second Annual Ball\, a very special event in aid of ‘The Maddi Foundation’ and ‘Save Our Maddi Appeal’! \nThe Ball is the most glittering\, glamorous evening in our calendar and our Host will be “Allo Allo star” Vicki Michelle. As usual there will be fabulous entertainment to enjoy\, a live and silent auction and of course\, a luxury three course meal in the stunning Ball Room at the magnificent Down Hall Country Hotel. \nProfits from the evening\, which includes the auctions and raffles\, will go towards funding The Maddi Foundation SPG15 research projects as well as ‘Save our Maddi Appeal’ to support Maddi on her journey for life changing surgery in America to keep her moving! \nThe Evening includes: \nA sparkling drinks reception\nLuxury three course meal followed by coffee and petit fours\nLive entertainment\nLive and silent auctions\nCelebrity Host\nAnd lots more… \n URL: LOCATION:Down Hall Country House Hotel\, Matching Road\, Hatfield Heath\, Essex\, United Kingdom CATEGORIES:Maddi ball ATTACH;FMTTYPE=image/png: END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20191001T140000 DTEND;TZID=Europe/London:20191001T170000 DTSTAMP:20240305T084400 CREATED:20200311T144917Z LAST-MODIFIED:20200316T104110Z SUMMARY:Bridge Afternoon DESCRIPTION:Any Bridge players interested in joining a Bridge Afternoon at the beautiful Hall Barn in Great Thurlow\, with a delicious tea and fabulous raffle prizes. The event is organised by the 3 Counties Committee who are raising funds for a few local charities along with The Maddi Foundation. \n URL: LOCATION:Hall Barn\, Bury Road\, Great Thurlow\, Suffolk\, CB9 7LF\, United Kingdom CATEGORIES:Fundraising END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190923 DTEND;VALUE=DATE:20190924 DTSTAMP:20240305T084400 CREATED:20200314T074353Z LAST-MODIFIED:20200316T104138Z SUMMARY:RAREsummit 2019 DESCRIPTION:The Maddi Foundation are proud to be speaking as part of a panel discussion at Cambridge Rare Disease Network’s RAREsummit 2019. We’ll be discussing patient groups as part of the drug development process and our successes and barriers which stifle progress. More information on RAREsummit19 is below. \nPATIENTS AS PARTNERS – EMPOWERED PATIENTS INFLUENCING CHANGE \nRAREsummit19 is a 1 day summit focusing on patient centricity in rare disease – mastery\, opportunities and trends in the drug development process\, healthcare and assistive technologies. \nCRDN aims for this event to reach 300 attendees (a rise in 100% since our inaugural summit of 2015)\, 20+ speakers\, 50 exhibits and patient journey posters. We’ll provide opportunities for attendees to discuss with experts which are the most pertinent challenges and innovative solutions in ensuring patients are valued and essential partners. A highlight of the rare disease calendar – can you afford to miss out? \nWHAT IF? \nWhat if we were able to share information with the power to revolutionise the current rare disease landscape? What if we could provide solutions to patients now\, answering their pressing questions about their disease\, care\, and treatment? What if we could ensure that patients and advocates played an equal and vital role in the development of drugs\, assistive technologies\, and healthcare? Rare disease patients and their families are tired of waiting for answers and the slow pace of change. They want to be involved and share their lived experiences to help companies\, researchers and healthcare professionals find answers and solutions. Hear from\, learn from and engage in cross-sector activities with a range of stakeholders: patients; patient advocacy groups; researchers; health care professionals and companies who are leading the way in pioneering partnerships to accelerate change. \nJoin us at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases. \nTHE HACKATHON CHALLENGE \nThe day will culminate in a ‘hackathon’ activity. So what’s a hackathon? In a nutshell\, cross-sector delegate teams will work together to create an innovative solution to a challenge\, employing their diverse experience\, skills\, and approaches and applying their learning from the day to best effect. Speakers from the day\, CRDN team members and local accelerator programmes will mentor groups\, providing support and guidance to develop solutions that are patient-focused\, user-centred designs. \nSelected teams will have the opportunity to pitch their idea on stage. We aim for delegates to be inspired to develop this cross-sector approach with patients as equal and vital partners. \nNETWORKING and COLLABORATION \nDuring an extended lunch\, delegates enjoy networking and browsing up to 50 charity and company stands and a patient journey poster exhibition. For our summit 2017\, 52 patient journey posters were created by various rare disease patient groups and individuals. Some of these will be displayed along with a new collection. \nThe day will close with a complimentary drinks and canapes reception where delegates can enjoy networking\, reflecting on their day and developing partnerships for the future. \nAGENDA and SPEAKERS \nA selection of the 25 confirmed speakers \n\nAlastair Kent\, OBE – Expert in policy development and patient engagement for health and medical research in rare and genetic diseases\nDr Jonathan Milner – Co-Founder and Deputy Chairman of Abcam\, biotech entrepreneur and CRDN Trustee\nDr David Brown – Co-founder & Chair of the Board\, Healx Ltd\nEmily Crossley – Co-Founder and joint CEO of Duchenne UK\nDr Tim Guilliams – Co-Founder and CEO of Healx Ltd and Founding Director and trustee of CRDN\nDr Ana Mingorance – Chief Development Officer of the Loulou Foundation and Scientific Director of Dravet Syndrome Foundation Spain\nElin Haf Davies – Founder and CEO of Aparito\nDr Nicolas Sireau – CEO and Chair of Trustees at the AKU Society\nDr Cecily Morrison – Researcher\, Human Experience & Design Group\, Microsoft Research Cambridge\nThomas Agorka – Founder and CEO of Orphan Reach\, CRO\nPete Chan – Head of Research and Analysis\, Raremark\nTanya Collin-Histed – Chief Executive Officer\, International Gaucher Alliance\nDr Joanna Segieth – Biosynetix Ltd\, Rare Drug Development Solutions\nDr Sarah Leiter – Junior doctor at Addenbrookes CUH\, CRDN trustee and Albinism advocate\nLaurence Woollard – Founder and Director of On the Pulse Consultancy and haemophilia advocate\n\nWHY ATTEND? \nLearn something new\, be inspired\, meet people\, add value\, collaborate \nBuild your network with 300 biotechnology\, pharma and startup leaders\, patients and patient group CEOs\, healthcare professionals\, researchers and students assembling to address key issues to enabling and promoting collaborative working to improve the rare disease patient journey \nHear from\, and put questions to\, key opinion leaders through Q+A and event technology \nTake part in cross-sector activities \nHold crucial discussions with potential partners from local and global arenas \nExpand your knowledge and keep abreast of opportunities and trends in the drug development process\, healthcare innovation and disruptive technologies in the rapidly evolving rare disease landscape \nJoin us at the Wellcome Genome Campus; a hub of life-changing science\, we think it’s the perfect venue to make progress for rare disease. \n URL: LOCATION:Wellcome Genome Campus\, Hinxton\, Cambridge\, CB10 1RQ\, United Kingdom CATEGORIES:Conference ATTACH;FMTTYPE=image/png: ORGANIZER;CN="Cambridge%20Rare%20Disease%20Network" END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20181014 DTEND;VALUE=DATE:20181015 DTSTAMP:20240305T084400 CREATED:20200314T075329Z LAST-MODIFIED:20200316T104206Z SUMMARY:Royal Parks Half Marathon 2018 DESCRIPTION:Join Team Maddi on the Royal Parks Half Marathon \nLimited places left. Free registration \nThis stunning 13.1 mile route takes in the capitals world famous landmarks on closed roads around four of London’s Royal Parks – Hyde Park\, The Green Park\, St James Park and Kensington Gardens. \nPlease email to register your interest and help raise awareness and sponsorship for The Maddi Foundation. \n URL: CATEGORIES:Fundraising,Sporting event ATTACH;FMTTYPE=image/png: END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180916 DTEND;VALUE=DATE:20180917 DTSTAMP:20240305T084400 CREATED:20200314T080105Z LAST-MODIFIED:20200316T104227Z SUMMARY:London to Brighton Cycle 2018 DESCRIPTION:Come Join Team Maddi for this mass participation cycle ride which covers 54 miles from Clapham Common in London to Madeira Drive on Brighton sea front. \nThe Maddi Foundation are pleased to offer riders a FREE place to take part to support our Charity. \nBeginners are welcome on this ride but do recommend plenty of training before the challenge. \nUpon signing you are pledging to hit your set fundraising target of £195 – we will supply you with a justgiving fundraising page for your sponsors. \nDo contact us for an information pack. \n URL: CATEGORIES:Fundraising,Sporting event ATTACH;FMTTYPE=image/png: END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20180911T190000 DTEND;TZID=Europe/London:20180911T233000 DTSTAMP:20240305T084400 CREATED:20200314T081148Z LAST-MODIFIED:20200316T104433Z SUMMARY:Beresfords Quiz Night 2018 DESCRIPTION:Beresford Estate Agents are holding a quiz night in support of The Maddi Foundation at The Saracens Head Hotel\, Dunmow. \nTicket price is £5 per person. Tickets will be available on the night for £5 or pop into The Saracens Head Hotel to put your name down in advance. \nRaffle Prizes to be won!!! \nAfternoon tea for two at Tiptree Tea Rooms. \nCut and Blow Dry at Smith & Co. \nBeauty Treatment at Scarlett & Stone \nAnd many more… \n URL: LOCATION:Saracens Head Hotel\, High street\, Great Dunmow\, Essex\, CM6 1AG\, United Kingdom CATEGORIES:Fundraising ATTACH;FMTTYPE=image/png: END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20180630T193000 DTEND;TZID=Europe/London:20180630T233000 DTSTAMP:20240305T084400 CREATED:20200314T082619Z LAST-MODIFIED:20200316T104504Z SUMMARY:Charity Buffet & an Evening of Entertainment with Elvis DESCRIPTION:Come and join us for loads of laughs and fun with one of the best Elvis Tribute Acts around. There will be a buffet whilst enjoying all of Elvis’s greatest hits performed live. \nTickets ONLY £10 pp (includes buffet). Telephone to book 01787 237418 or 07713133999 \nAll in aid of supporting our very worthy cause The Maddi Foundation who are based locally. \nThe Charity was set up by Maddi’s family after the teenager was diagnosed with an extremely rare disease called SPG15\, a very serious neurological condition that today still does not have a cure. The Foundation is helping to raise awareness and funds for research into the disease for a hopeful treatment. Please do come and support us. \n URL: LOCATION:The Green Man\, 3 Church Lane\, Topplesfield\, Essex\, CO9 4DR\, United Kingdom CATEGORIES:Fundraising ATTACH;FMTTYPE=image/png: END:VEVENT END:VCALENDAR