We had the pleasure of traveling to Boston last month for the 6th annual Battle of the Biotech Bands. Four bands formed by employees from biotech corporations compete to support a charity of their choice. Sanofi Genzyme's band, Led Zymmelin, selected our non-profit partner Harmony 4 Hope as their charity. Peter is a Rare Storyteller for H4H as well as an avid guitarist, so we were excited to help rock research for rare disease!
Band members from Led Zymmelin invited Peter to play a song with them as a surprise guest appearance during their set. It was powerful to see a teenager literally rocking rare disease, especially one with microtia/atresia on his left side (missing left ear and unilateral hearing). Check out this clip of Peter rocking at the battle.
The 2019 Battle of the Biotech Bands raised $120,000 for the four chosen charities! We are grateful for events like this where funds are raised for rare disease research. Peter has Goldenhar-Gorlin Syndrome and undergone 30 surgeries in his 18 years. Goldenhar is a collection of birth defects also known as Oculo-Auriclo-Vertebral Spectrum (OAVS). Here is the most recent information reported by National Organization for Rare Disorders.
In most cases OAVS appears to occur randomly, with no apparent cause (sporadic). However, in some cases, family histories suggest autosomal dominant or recessive inheritance. In addition, some researchers suggest that the disorder may be caused by the interaction of many genes, possibly in combination with environmental factors (multifactorial inheritance).
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