In 2011, I came in contact with Jasper Smit. At his request in 2012, my son Maarten and I made this special website for him. Are you a GIST Carney’s Triad patient, or are you a parent of a child with Carney’s Triad, contact us atwww.carneytriad.com.
One patient already contacted us when www.carneytriad.comwas just being launched. We were greatly astonished when a young woman with a complete Carney’s Triad contacted us via our website, as she happens to live only a 25 minute drive from Jasper’s city. What a joy and recognition!! Henriëtte and Jasper met immediately and she went for a second opinion to his own expert oncologist Dr. Winette van der Graaf at Nijmegen.
Dutch representation since 2012 for UK-based PAWS-GIST
In 2011, I brought Jasper in contact with Jayne Bressington of PAWS-GIST in the United Kingdom. This organization is founded by mothers of teenage daughters with GIST, and is a member of GIST Support UK. They are working in partnership with experts in America and Europe, aiming to improve treatment and care of these patients in the United Kingdom, and beyond. And, of course, to search for a cure for young GIST patients. At the request of Jayne, Jasper and I are now the Dutch representation of PAWS-GIST, something we of course love to do!