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Support Network / Trust Fund

My name is Maria Liistro and I am the founder of the Trichotiodystrophy, Xeroderma Pigmentosum and Cockayne Syndrome Trust Fund. Our foundation supports a very special and unique group of individuals who have been disadvantaged by a extremely rare and life threatening illness called Trichothiodystrophy, XerodermaPigmentosum and Cockayne Syndrome. These individuals are allergic to UV light and it causes neurological and life threatening damage to their cells, immune system, brain and other vital organs. Part of the effects of the condition are that the families experience isolation, loneliness and suffering. The families also experience severe financial hardship due to trying to endlessly protect their children from the harmful UV rays of light. How do they hide from light? Most areas and centres are light-filled causing many problems for those who suffer with these conditions. The Friends of Sammy-Joe Foundation was founded by me - I am Sammy-Joe’s mother Maria Liistro. The Foundation aims to assist sufferers of the rare genetic life threatening illness Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne Syndrome. The Foundation seeks to raise funds to enable sufferers to enhance their quality of life by providing financial assistance for costs including medical bills and other related costs such as solar protective clothing, sunscreens, necessary tinting of windows, and medication aides and therapy sessions which are not covered by government assistance. The families experience poverty and struggle, and are also very socially isolated, so we would like to break down these barriers within society for them and help change their lives for the better. The committee formed two years ago to support me in raising funds for children, young adults and adults. The funds provided the children with the essentials, and also further raised awareness and helped find other sufferers of the condition. I envisaged and planned the creation of this Trust over many years, and sourced legal assistance and found Trustees in 2006. I approached Clayton Utz solicitors to work on the Foundation on a Pro bono basis and finally, in 2007, the Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne's Syndrome Trust Fund was endorsed. I have a passion about increasing awareness of these debilitating conditions and of increasing support available for individuals and families affected. The families experience extreme bouts of isolation as all the sufferers are allergic to light .All sufferers also experience mental illness, cognitive impairment and psychiatric disabilities as the conditions are neurological and degenerative. The aims of this Trust include enhancing the quality of life; maximizing the abilities of family members in the care of their child/young person; increasing community awareness of these conditions; and supporting the financial costs associated with the needs of these children/young people. Amongst other effects, those affected by the above three conditions have an extreme sensitivity to UV light. The main effect of UV light exposure is irreparable damage to the immune system, organs and DNA. It is a neurological disorder and sufferers also suffer severe mental breakdowns, intellectual disability and also psychiatric trauma. Also, the effects a person with typical UV skin protection will experience after an extended period of time in bright hot sunlight can be received from an indoor fluorescent light in a matter of minutes when affected by these disabling conditions. All of the children and young adults affected are quite disabled and have neurological problems.
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