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Help Snigdhodeep raise money

For participating in 2023 TCS Toronto Waterfront Marathon

Description

ASH1L related disorders is known to cause several neurodevelopmental disorders like Autism Spectrum Disorder, ADHD, Intellectual disability and memory deficits. It is also associated with seizures/epilepsy, musculoskeletal disorders, hypotonia, speech and feeding issues, sleep disorders, vision and hearing impairments, gastrointestinal disorders and heart abnormalities. With fewer than 100 families diagnosed with this condition, the disorder is considered ultra rare leaving newly-diagnosed families overwhelmed. Your generosity can assist us to foster our mission of -

  • Raise awareness on ASH1L related disorders so that medical professionals can relay better information to the diagnosed families and thereby empowering our ASH1L community. This will enable ASH1L families have a better understanding of the disorder and implement strong advocacy strategies for their ASH1L Warriors.
  • Raise funds to accelerate research on ASH1L at Brown University, USA - The discovery of ASH1L was only made in the year 2000 and ASH1L gained prominence only in 2012 which resulted in no clinical study for this disorder. The goal of the researchers at Brown University is to not only understand the molecular function of this gene in human body using animal models and iPSCs (Induced Pluripotent Stem Cells) but also to imply their knowledge on clinical studies by recruiting ASH1L Warriors in the Natural History Study (NHS). The role of NHS is not only to create a database of existing ASH1L Warriors for mapping genotype-phenotype correlation but to also form a concrete base for future clinical trials. 

Your benevolence will pave way for the future of ASH1L Warriors and their families!