Join us for a fun family Rare Disease Day event on
Sunday February 27th at 3 pm PST / 6 pm EST
Hosted by Cameron Andres, we will have beloved author Deborah Katz of Rare is Everywhere speaking about her book and her insights into talking with kids about rare diseases. We will also interview 12-year old Felix Townsin, author of Don't Floss Your Toes!
Enjoy family-friendly art and movement activities to enhance this special day. Great for kids and kids at heart!
Register now to save your spot!
SPECIAL GUESTS
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Our host, CAMERON ANDRES, is a polymath - a person of wide-ranging knowledge or learning. Now in his fourth year at UBC studying physiology and immunology, he is involved already with research into rare diseases. Working as an intern with RDF, he aspires to apply his knowledge to practice medicine. An accomplished singer, actor, and violinist, Cam has also made his mark on the stage and in front of the camera from an early age. On top of this, he is passionate about politics, languages, and especially his family.
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DEBORAH KATZ is a Vancouver, BC, nursing professor with nearly 20 years of experience in health care. She is also an artist who, before moving into digital illustration, painted using a multimedia approach that involved acrylics, watercolour, photography, and collage. Her work has appeared in local galleries and various publications. In addition to Rare is Everywhere, Deborah has authored and edited many professional publications, as well as written and illustrated a handbook on organic gardening for children. You can learn more about resources for using Rare Is Everywhere with children on the website: https://rareiseverywhere.com/
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When Felix was 5, he wrote Don’t Floss Your Toes, as a fundraiser for Blau Syndrome (early onset sarcoidosis) and juvenile arthritis. At that time there was no foundation for Blau syndrome. His goal was to raise $10,000 before his 12th birthday on January 20, 2022... and he ended up raising 3x that amount! These funds will be allocated towards establishing criteria to prevent future deaths from MAS/HLH - a severe reaction of the immune system, which was misdiagnosed with his little sister Lexi. You can find out more about Lexi and Blau syndrome on Felix's webpage: Lexi's Legacy
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