This coming April I will be running in the London Marathon in an effort to raise money for the Lily Foundation. The inspiration for this endeavor comes from Remi, a beautiful little girl who suffers from this debilitating disease. Remi is Michelle’s cousin who I had the chance to meet last spring. Remi was diagnosed with a very rare RARS2 gene mutation which is known to cause Developmental Epileptic Encephalopathy & Pontocerebellar Hypoplasia Type 6. This mutation is so rare that there are less than 50 people in the world with RARS2. While this is an incurable, lifelong and life-limiting condition - this has not stopped Remi from smiling and bringing constant joy to her family who adore her. Seeing her situation and how her family is fighting for her is truly inspiring, as one of her “mums” ran the London Marathon for the Lily Foundation last year. Please consider making a donation to the Lily Foundation to support Remi and others affected by Mitochondrial Disease.

The Lily Foundation's mission is to end the suffering caused by mitochondrial diseases through support, research and education. Mitochondrial disease refers to a group of genetic conditions that disrupt how our mitochondria – the energy producers in our cells – function. These disorders can affect high-energy parts of the body like the heart, brain, muscles, liver, eyes or ears, with symptoms ranging from mild to severe. For some patients, only one organ is impacted; for other, multiple organs are affected.

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.

Thank you,

Kevin