We have three clear aims at The Lily Foundation; to fund research; to support families and to raise awareness. At the end of each financial year we look at what we have raised and we allocate funds to ensure we meet these aims.
2015 – 2016
We are very proud to be able to continue funding our national Lily Gene Testing Programme giving families a genetic diagnosis for their disease, helping them better understand the likely progression of their condition, and the risk of having more affected children. This testing, is not available on the NHS, and has been a lifeline to so many families. Of the 100 families we have tested so far, we have been able to give quick and accurate answers to 60% which is an incredible success rate. We hope to continue supporting this valuable diagnostic work until the NHS is able to provide an equivalent service.
We also fund 5 Researchers around the country who support our Lily Gene Testing Programme by analysing and identifying the function of disease causing genes, as well as work on other valuable projects. We also part fund a mitochondrial specialist nurse at Great Ormond Street Hospital who works closely with families and assists with recruitment into other research studies.
We are very excited about the future of Mitochondrial Research, and 2016 marks a significant next step for us. With your support, we hope to soon expand into a new area - Developing Treatments for Mitochondrial Disease.
Supporting our families is an extremely important part of what we do and this was one of the main reasons we started the charity.
When you receive the news that your child has Mitochondrial Disease it is devastating, and to have somewhere to turn to for help and support is so important. The Lily Team are always available to talk over the phone or email.
Our second National Family Weekend was held in September 2015 and was attended by families, doctors, scientists and researchers. This incredible weekend offers so much - from practical advice to support, fun and friendship.
Lily’s Helping Hand has really taken off this year and we have been able to part fund a garden project for The Bamber sisters, and a new adapted pushchair for Frankie Penfold.
Center Parcs offers our families a break from daily routines and an opportunity to forget how tough life can be and just enjoy spending time with each other. This year we have sent 13 families to Center Parcs.
Having your child in hospital for long periods is hard. We are proud to continue to fund family hospital accommodation in London, Newcastle and Oxford so parents can stay close to their sick children.
Support networks are crucial to families who have a child with a rare condition – without these it can be so isolating. Having listened to our families, this year we set up our Lily Family Facebook Group. This is a closed group for our families who can now talk to each other, ask for help, advice and have people who understand just there! The Lily family continues to grow.
We know just how important it is to raise awareness – without awareness there is no money, without money there is no research, and without research there will be no cure!
Our Schools Programme has really taken off and we have accepted invitations to speak at events all around the country to spread the word. This year we have spoken at 40 schools which equates to 7100 young people aged between 4-18 being better informed. We see this as educating our doctors and scientists of the future!
2014 - 2015
The Lily Gene Testing Programme has really taken off this year, we have finally over come all the red tape and bureaucracy which held us back and we are finding answers.
Our programme is giving confirmed genetic diagnosis for over 60% of our families and our research fellows are working on new genes to get answers for the rest. We are so pleased and excited about these results.
Mitochondrial Donation is now a reality!!! The Lily Foundation worked alongside The Wellcome Trust, Newcastle University and Muscular Dystrophy on a campaign to get regulations passed through Parliament. The Lily Families and supporters were instrumental in the campaign writing and visiting MPs. Together we did it - we changed the law!
Wow - it has been an incredible year.
The Mitochondrial Donation Debate raised the profile of The Lily Foundation tremendously. We appeared on national and international TV and radio, quoted by peers and MPs in speeches in Parliament. It was an incredible experience.
Claire Wright launched our Schools Programme. Our 10 minute assembly expains what mitochondria are, what happens when someone has Mitochondrial Disease and what our charity does. She has to date spoken to over 3500 school children aged 5-16, educating and inspiring the doctors, researchers and decision makers of tomorrow.
Also this year, David Walliams book 'A Boy in a Dress' was made into a film for Christmas, it was filmed at Walton Casuals, with Lily banners around the pitch - absolutely great exposure.
We are now officially a charity partner of Watford Football Club, with crowd facing boards around the ground. We also held a Lily Day there earlier in the season, players warmed up in Lily t-shirts, two Lily mums led the team out of the tunnel carrying a Lily Banner and a collection took place. We are also delighted that Watford will be in the Premiership for the 2015-2016 season.
We also have a Lily Day to look forward to at Crystal Palace FC on Sunday 24th May 2015.
Finally we had another TV mention when Josh Widdicome appeared on and won Pointless Celebrities and chose to support The Lily Foundation.
This has been a huge area of growth in the charity over the past few years, and we were delighted to hold our first Lily Family Weekend. Families from around the country came together for a family fun day, followed by a day of seminars hosted by our amazing doctors from The Evelina, Great Ormond Street, Newcastle and Oxford. There were also emotional support seminars held by Child Bereavement UK. It was a huge success and we are holding our second in Sept 2015.
We continue to fund family accommodation throughout the UK and we are able to continue to send families to Center Parcs.
We have launched our 'Helping Hand Scheme' this year. Families in need of equipment fundraise for half the cost and then once this has been raised, we fund the remaining 50% to enrich the lives of those suffering from Mitochondrial Diseases.
Supporting young people is an area that we want to grow. Over this past year, there have been a number of young adults who suffer from Mitochondrial Disease come to us, we now want to grow our support network in this area.