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Support Network / Trust Fund
- To model and support developmentally appropriate play experiences and parenting practices for all sufferers who are allergic to UV rays, and their families - To provide an area for the children and young adults to meet in a safe environment, and provide an opportunity to play outdoors away from the sunBecause the running costs of the group are quite high, we are seeking funding and donations to enable us to run the groups into the future in the purpose-built pavilion which is situated in the base of the Foundation and Charity quarters. We also hope to alleviate the loneliness, isolation and suffering that these individuals and their families experience.The funding will be beneficial to the children, young adults and adults who suffer with Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne Syndrome.I do hope that you will consider a donation as we are a unique group and have come a long way to band together and make a difference for each other.The Friends of Sammy-Joe Foundation is solely run by volunteers who donate a lot of their time to achieve positive outcomes, and to make a difference to these very special lives.We are a small, new charity with big values and big plans. Kindest Regards Maria Liistro Founder and Volunteer CEO Of The Friends of Sammy-Joe Foundation The Trichothiodystrophy , XerodermaPigmentosum and Cockayne Syndrome Trust Fund