A Recap of the Global Genes Tribute to Champions of Hope Event

James Radke

The Global Genes’ Tribute to Champions of Hope gala was held Saturday evening in Anaheim, California, and honored those who received awards at the annual Global Genes Summit.

The evening started with Global Genes’ founder and CEO Nicole Boice introducing Gavin Stevens of NBC’s Little Big Shots. Gavin, a young man with Leber’s congenital amaurosis, a rare genetic disease that has left him blind, performed the national anthem.

Actress and Global Genes Ambassador Madison McLaughlin followed the performance with a summary of the Champions of Hope nominees that were presented awards the previous evening including: Taylor Kane (Teen Advocacy), Claire Wineland (Rare Disease Awareness), Kari Rosbeck (Collaboration in Advocacy), Colin Steward (Medical Care and Treatment International), Anne Lawlor (International Advocacy), Penny Howard (Advocacy), Sparsh Shah (Advocacy) and Annette Bakker (RARE Champion of Hope – Science).

Shah, a 13-year-old, rapper, singer, and songwriter performed 2 songs for the crowd, including his cover version of Eminem’s Not Afraid. Shah has osteogenesis imperfecta, a congenial bone disorder that has led to his breaking bones more than 100 times and left him confined to a wheelchair.

Other musical performers of the night included singers Andrew McMahon of the bands Something Corporate and Jack’s Mannequin and Stephanie Rice. Both performed rousing acoustic sets.

The evening included an emotional tribute to the former CEO of Genzyme, Henri Termeer, who passed away unexpectedly earlier this year. Boice, Amicus CEO John Crowley, and BioMarin CEO Jean-Jacques Bienaime provided moving stories to remind the audience the significant impact Henri made in creating the orphan drug industry.

The gala ended on a high note with an award given to the “We Carry Kevin” team who carried Kevin Chandler, a spinal muscular atrophy patient, across Europe. Their story reminded everyone that anything is possible with belief and positive energy.

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