A SYNGAP1 gene mutation can cause a variety of symptoms that can range from mild to severe. The most common symptoms include learning difficulties, epilepsy, behavioural challenges, autism, and sensory processing disorder. Research is vital.

I usually do a fundraising with my friends and family to raise awareness of Lili rare condition on her birthday to October - her disease conference. Last year we did swim 11 - swimming 11 miles per month till October - raised £3,000 and donated on the conference.

I would like to propose similiar but open to all individuals this year. Conference this year is happening in Manchester - 150 miles oneway, 300 miles round trip. Lili is 12 this year - lets do 12 times the round trip - covering 3600 kms by walk,run,swim,cycling etc. 3600kms seems a lot. We covered 3921.04 kms on 2020.