I had the pleasure of representing us at the CdLS International Conference last weekend in Europe. It was a bittersweet experience to say goodbye to our friends around the world who are part of our CdLS Family. It was thrilling to see families from Germany, France, Italy, Spain and the Netherlands all together in our host city of Bad Neuenhr Germany to hear advice from CdLS experts from around the world and share advice with each other. I wish to personally thank Kent, Gerritjan and the rest of the team for their hard work in putting on a spectacular conference!

I had the opportunity to meet with my colleagues around the world who are similarly tasked with leading their CdLS organizations. Based on the local laws and customs, each country has organized an ecosystem of support among specialists and families. One critical piece we all felt was missing on our advisory teams was the expertise of our parents who care for their loved ones with CdLS and have accumulated invaluable experience in living with the condition. Although we know this happens informally and lovingly on various social media platforms, we agreed to convene an International Team of Parent Experts to distill their life experiences into meaningful advice for other parents. Life experience of someone who has lived through the complexities of CdLS and navigated many challenges deserves to be acknowledged.

For each country present there are many others who have emerging organizations – such as Vietnam, Japan, Israel and Uganda to name a few.  One of our major objectives at the World Federation is to organize medical missions to send our CdLS Medical Experts to see patients and train local physicians in the specialty treatments of CdLS.  Last year, our own Medical Director, Dr. Tonie Kline, visited Columbia on such a mission – and she performed many consults.

At a time of great strife in our world, it was truly a thing of beauty to see the collaboration of medical teams from every country unite to provide care for our families. I look forward to recreating the magic with all of you at our upcoming national conference next June.

See you in Tulsa!


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