Love ForLeon - Debbie & Ilona 13.1M
Donation protected
March 2018
We are providing an update to the campaign because our amazing friend Debbie along with Ilona will be participating in their first half marathon on March 11th. Debbie said that she would like to raise money for Leon, to help with his journey with Duchenne.
The 96 week clinical trial for Eteplirsen has now finished and the drug has been approved in the United States and is now known as Exondys51.
Leon now has a weekly infusion of Exondys51 at home, which sure beats the 400 mile round trip to Iowa City that we had to make every week for him to receive the drug. He is such a brave boy and receives his infusions without any fuss.
We are so grateful that Leon has had the opportunity to come to America as he is not loosing skills which would generally be expected at this stage of his life.
Exondys51 is approved in the USA, but it is not approved in Europe yet. We are really hopeful that approval will come soon as we would all love so much to return to the UK and for the drug to be available to others who suffer from the disease.
Thank you for taking the time to read our update, and our heartfelt thanks for your donations.
Alternatively you can donate to Harrison’s Fund who fund research into treatments for Duchenne at www.harrsionsfund.com
August 2015
Starting is often the hardest bit and asking for money is even harder.
I have this amazing friend I met through running, Louise Crow-Arnold. I had heard of her through our local running group as she was training for the London Marathon in 2014. Our running group also doubles as a bit of a support group and this is how I got chatting to Louise and finding out about her family. She has 3 boys, her youngest, Leon was diagnosed with Duchenne Muscular Dystrophy last year. Duchenne is an incurable genetic disease - its terminal.
Having a child that has a terminal illness leads to nonstop hospital appointments and a full on race to try and find a cure. On a run, we starting chatting about fundraising and how hard it is to be constantly asking for money this led me to Gofundme.
Louise and her family are big fundraisers for many Duchenne charities but this time it's for Leon as the family are looking to get him on a clinical trial in the USA. This is an awesome opportunity for Leon, but it will come at a cost.
DMD is the number one genetic killer of children and young people. There is no cure.
We are providing an update to the campaign because our amazing friend Debbie along with Ilona will be participating in their first half marathon on March 11th. Debbie said that she would like to raise money for Leon, to help with his journey with Duchenne.
The 96 week clinical trial for Eteplirsen has now finished and the drug has been approved in the United States and is now known as Exondys51.
Leon now has a weekly infusion of Exondys51 at home, which sure beats the 400 mile round trip to Iowa City that we had to make every week for him to receive the drug. He is such a brave boy and receives his infusions without any fuss.
We are so grateful that Leon has had the opportunity to come to America as he is not loosing skills which would generally be expected at this stage of his life.
Exondys51 is approved in the USA, but it is not approved in Europe yet. We are really hopeful that approval will come soon as we would all love so much to return to the UK and for the drug to be available to others who suffer from the disease.
Thank you for taking the time to read our update, and our heartfelt thanks for your donations.
Alternatively you can donate to Harrison’s Fund who fund research into treatments for Duchenne at www.harrsionsfund.com
August 2015
Starting is often the hardest bit and asking for money is even harder.
I have this amazing friend I met through running, Louise Crow-Arnold. I had heard of her through our local running group as she was training for the London Marathon in 2014. Our running group also doubles as a bit of a support group and this is how I got chatting to Louise and finding out about her family. She has 3 boys, her youngest, Leon was diagnosed with Duchenne Muscular Dystrophy last year. Duchenne is an incurable genetic disease - its terminal.
Having a child that has a terminal illness leads to nonstop hospital appointments and a full on race to try and find a cure. On a run, we starting chatting about fundraising and how hard it is to be constantly asking for money this led me to Gofundme.
Louise and her family are big fundraisers for many Duchenne charities but this time it's for Leon as the family are looking to get him on a clinical trial in the USA. This is an awesome opportunity for Leon, but it will come at a cost.
DMD is the number one genetic killer of children and young people. There is no cure.
Organizer
Christy Elliott Dadswell
Organizer
