In Memory of Tony Kingstone

22/9/44 - 5/4/24

As a family we are kindly asking for no flowers, and instead we have chosen a charity that would have the most meaning to Tony - both during his life and in his memory.  

Tony's youngest granddaughter, Edith, suffers from a very rare genetic condition called BBSOAS, a mutation of the NR2F1 gene.

There is only one charity in the world funding research into the condition, and we know Tony was very supportive of it.  The funds raised in Tony's memory will go towards funding a post-doctoral researcher, who everyday is dedicated to finding answers for the children and families living with BBSOAS.

Thank you so much for your consideration.

Note - while the payments appear in dollars, you can pay with a UK card as normal.  It is in dollars as the charity is registered in the US, but funds research and supports families globally.  Tonys step-daughter, Jennifer, helps run the charity and we assure you all funds will go directly to research.

A little about BBSOAS: 

BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome, is a rare neurodevelopmental disorder caused by a disruption in the NR2F1 gene. BBSOAS is characterized by a wide array of clinical features, but the most common are visual impairment, developmental delay, seizures/epilepsy and intellectual disability. Children with BBSOAS often find it hard to learn to walk, talk or live independently.  There are currently only a few hundred known cases of BBSOAS worldwide.  

The NR2F1 Foundations mission is to empower families and individuals living with rare NR2F1 variants through education, advocacy and research.

https://nr2f1.org