Care4ASH1L
Registered Name: Care4ASH1L
Business No: 770690261RR0001
This organization is designated by Canada Revenue Agency (CRA) as a registered charity. They comply with the CRA's requirements and have been issued a charitable registration number.
This charity is fully set up with CanadaHelps, allowing for faster donation processing and access to more features
Care4ASH1L is a charity incorporated to raise awareness on ASH1L related disorders, empower ASH1L community, accelerate research on ASH1L.
Care4ASH1L is a CRA approved Canadian charity established in November 2021. It is a first ever patient advocacy organisation for ASH1L related disorders. ASH1L mutation is a known cause of neurodevelopmental disorders like Autism, ADHD, Intellectual Disability and Schizophrenia. It is also associated with other disorders like seizures/epilepsy, Dravet Syndrome, Hypotonia, Musculoskeletal Deformities, Hearing & Vision Impairments, Sleep disorders, Speech Delays, EoE, Feeding Issues, GI Disturbances and Heart abnormalities. Care4ASH1L has been established with the vision and mission to:1. Raise awareness on ASH1L related disorders2. Engage with researchers worldwide to study ASH1L mutation3. Empower ASH1L Patient Community and provide tools for better advocacy4. Raise funds to support, accelerate and progress research on ASH1L by collaborating with academic researchers who have interest on ASH1L gene5. Support ASH1L researchers find a cure or a therapeutic intervention for ASH1L6. Provide unbiased access to ASH1L families to participate in clinical trials7. Create a robust and ethical ASH1L patient registry to encapsulate patient data and the result of clinical trials8. Set up a biobank repository to enable faster and easier access to ASH1L patient bio-samples for future research9. Understand the priorities and perspectives of the ASH1L patient community and incorporate a patient-driven research focus10. Ensure that the patient population is given equal access to the therapeutic interventions to help ameliorate the quality of life of those affected by this mutationCare4ASH1L was founded by three families who are closely associated with this mutation. Kimberly Gauthier, from BC Canada, is the Vice President and she has a son with ASH1L difference. Kevin Prenger, from Ohio USA, is the Treasurer and Secretary and he has a daughter with ASH1L mutation. Mukti Reddy, from Toronto Canada, is the Chair of the Board and President and she has a son with ASH1L deletion.
