Hello, rare disease community!

My name is Christian Hommes and I am a father to an 8-year-old son, Silas, who lives with Angelman Syndrome (AS). AS is a rare neurogenetic disorder that affects approximately 1 in 15,000 individuals. It is characterised by severe developmental delays, lack of speech, seizures, and walking and balance disorders. The silver lining in this diagnosis is that one of the hallmarks is a happy personality and constant laughing. Silas’ diagnosis forever changed our lives, but we can’t imagine life without the light he brings into this world.

After any diagnosis, your world is rocked and you are left reeling, searching to hold onto a glimmer of hope and support. Our family found this in the AS community and advocacy groups that have carried us through the tough times and celebrated the triumphs. One of the few things we have control over in this journey is sharing our story and advocating for the best possible outcome for Silas.

This year, we are fundraising for Angelman Syndrome Foundation, an organisation that directly funds AS clinics, family support, research and potential therapeutics. AS research is at an incredibly exciting time with multiple pharmaceutical companies currently enrolling patients in clinical trials, some of which are directly targeting the underlying genetic cause of the condition.

On October 4-5^th I will be leading a team of 12 individuals, including three other AS fathers, to run a Ragnar Relay road race from Louisville to Lexington Kentucky. This is a non-stop running race over 200 miles long and lasting around 30 hours. Our team, named the “League of Extraordinary Angelmen”, has a goal of raising $50,000 for Angelman Syndrome Foundation and hopes this contribution will keep the momentum going towards a future cure.

If you are interested in following our story, please check out our team’s Instagram page@theleagueoea. Follow the link below to donate:https://support.angelman.org/team/572641.

Thank you for your time!

Sincerely, Christian Hommes

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