In 2014 we held our first Family Weekend. As a charity we were very aware that having a diagnosis of Mitochondrial Disease left our families feeling isolated and alone. The idea was that we would bring our families together for a weekend where they could meet, form friendships, enjoy being together in a safe environment where people just "got it". In addition we thought adding talks and lectures from the country's leading experts in Mitochondrial Disease would add tremendous benefits in regards to feeling up to date with everything Mitochondrial Disease related.
It was an amazing success!
We repeated the weekend in 2015 & 2016, slightly changing things from feedback from our families to make the weekend even better. Adding a gala dinner, extending the weekend for those that wanted to & including workshops for parents and our adult patients.
Lasting friendships have been formed and families have welcomed the opportunity to learn and meet the expert medical professionals in a completely different environment. They have told us it gives them an opportunity to ask the questions that sometimes are more difficult in a clinical environment.
Here is some feedback from those who have attended so far:
"Wonderful weekend bringing all these amazing families together - together we can make a difference and lovely to meet so many of you all this time and from last year and more of you next time xx"
"Thanks so much to the Lily team for the weekend...all your hard work and support for all the families is incredible and so appreciated"
"The memories you give us and the fun you provide for the children is so special... Not forgetting the education that we receive on the weekend too."
"Day 2 of the Lily family weekend. It's a place you don't want to be. Ever. But if faced with this disease knowing you are not alone means everything. Feeling the same feelings, thinking the same thoughts, hoping the same hopes and fighting the same battles. It's been a lovely weekend, emotional in a way I can't describe. Thank you The Lily Foundation"
We are starting to arrange our Family Weekend for 2017. We can only do this with the support of all our fundraisers and special grants from other organisation. We are so grateful for 2017 to have received funding from Jeans for Genes to help us make it a weekend to remember for all of our incredible families.
If you are a family who you think may benefit from one of our weekends or would like to volunteer to help make the weekend possible, please email email@example.com . Or to get involved and start fundraising visit our "Find an Event page".