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Our Fundraising Mission
We are committed to helping support families with Pontocerebellar Hypoplasia (PCH) and funding research into this rare condition.
This year The Joshua Deeth Foundation funded one years full time research into the condition led by one of the worlds leading specialist Professor Frank Baas. The research is being carried out in the AMC in Amsterdam (please see images below)
We are currently working on an information book on Pontocerebellar Hypoplasia which will contain the most up to date information on the condition aswell as family stories. There is very little information on the condition so we hope the book will be a good source of information for many worldwide. We hope to launch the book in early 2014.
The Joshua Deeth Foundation Care Grant
The Joshua Deeth Foundation Care Grants are offered to help families affected by Pontocerebellar Hypoplasia with the immediate financial needs of travel costs to hospital, unpaid leave from work and to help with other financial strain put on families.
We also offer grants to families to fund a photo session, family trip or holiday, equipement to help with family life.
Any family affected by Pontocerebellar Hypoplasia are welcome to apply. We are committed to helping everyone who needs our help.
For more information contact us via our Contact Page form
Presenting the Cheque to Professor Baas for PCH Research Project
Meeting Veerle who will be working full-time on the PCH Research
Tour of the Lab
Photo shoot for Family
We were lucky enough to apply and receive funding from The Joshua Deeth Foundation for both a family portrait studio session and foot and hand castings.
Knowing that our daughter Maia would never reach her first birthday motivated us to treasure every single day and make the most of the time we had with her. She was christened, visited Windsor Castle, saw monkeys at the zoo, patted a dog, potted a strawberry plant, did hydrotherapy every week, made snow angels, sent AND received valentines cards, went to a donkey sanctuary, attended two weddings as well as being flower girl, and watched so much football!
I took about 20 photos of her each day but it was rare to get pictures as a family. This is where The Joshua Deeth Foundation came to play – they gave us a grant and we arranged to attend a private studio for the afternoon. We dressed Maia up in the sweetest little outfit and the photographer started clicking. Three hours later we were looking at and choosing the photos from the computer. They were truly amazing and excellent work. We absolutely treasured these photos and have many large frames around the house showing them off.
We have lovely memories of the day as Maia was chilled for once and enjoyed all the fuss (especially the dancing photos with her Dad).
About a month or so later we organised for the hand and foot castings to be done too. Maia was extremely unimpressed with this (but then she was extremely unimpressed if we dared change her nappy) and the results were amazing. We have the casts framed and up on the wall and everyone comments on them when they see them.
We’d like to take this opportunity to thank everyone at The Joshua Deeth Foundation for giving us the chance to get both of these sessions done. We really appreciate and treasure them, especially as Maia is no longer with us.
On 16th Septemeber 2012 Joshua’s Charity funded our first PCH Lunch in London. Many families from all over the country got together some meeting for the first time to share their experiences and connect. It was a great day and some great friendships were made.
On 22nd March 2014 we hosted another PCH Lunch in London and were honoured to have Professor Frank Baas and his collegues Veerle and Bart attend. They gave a presentation on the latest finding from the research that The Joshua Deeth Foundation funded and gave time to talk and answers question to the families that attended. It was another very special and memorable day.
On 11th April 2015 The Joshua Deeth Foundation hosted their third PCH Lunch. Thank you to everyone who attended and made the day so special.