You can make a difference by donating today to TBCD - A Life For Leo Foundation.
A Life For Leo was registered as a charity (Reg. No.:1201144) in November 2022. A Life For Leo began as a personal fundraiser for Leo since he was the first in the UK to be diagnosed with a TBCD gene mutation. Since more children have now been diagnosed, our mission has grown to enable us to support the wider TBCD community.
TBCD (Tubulin folding Confactor D) is an extremely rare neuromuscular disorder that dramatically shortens the life of children, often robbing them of their later childhood years. This degenerative disease affects the brain, nervous system and muscles. As a result, patients often suffer from epileptic seizures, developmental delays and muscle weakness which causes difficulty moving and breathing.
Due to the rarity of this condition, there is no NHS funding or state support available. So it falls on the affected families to raise the funds to back our search for a cure.
With the help of a US-based Biotech corporation research is currently underway, with ongoing work, testing over 4,000 FDA-approved prescription medicines to see if one or more can be repurposed to treat symptoms of the TBCD disorder.
As this condition is caused by a genetic mutation within the TBCD gene, the hope is to find a drug to get the partially functioning gene to compensate for the dysfunctional one.
This life-changing research could alleviate TBCD symptoms in patients to improve their quality of life.
Thank you in advance for your contribution, you have no idea what it means to have your support.