Leadership Transitions in Koolen-de Vries Syndrome Foundation Non-Profit Organization

Having a child with an illness or a disease is a circumstance that can turn almost any parent into a fierce advocate. For Laura Ralph of Brownsburg, Indiana, her advocacy became a calling when she founded Koolen-de Vries Syndrome Foundation (KdVSF) in 2013. Ralph, who has served as president since the Foundation’s formation, is now stepping aside to hand the reins to Patty Tiberg of Aledo, Texas, whose son, Colby, has the syndrome.

“I went to a gathering in New York after my daughter, Eva, was diagnosed a few months earlier and met many parents dealing with the same issues,” she said. “Afterwards, I started a blog and was inspired by a blog follower that sent Eva an iPad, so for me it was about paying it forward.”

Since its founding, KdVSF has impacted the lives of families across the globe. “I knew it was something that people were experiencing around the world, so it was a vision of mine for it to be an international organization,” she said. “Patient advocacy has been a huge accomplishment for the organization and having the doctors get involved has been amazing. The awareness is incredible now, due to the thousands we’re reaching through social media and our website.”

During Ralph’s tenure, KdVSF has developed a KdVS Awareness Day that has been recognized by five states, as well as a virtual triathlon that attracts supporters from around the world. Most importantly, the organization held its first Patient Advocacy Summit in 2017, bringing together families and medical professionals, including Dr. Koolen and de Vries, to share information about the condition.

“Laura’s dedication to the formation of KdVSF has been the catalyst to the many advances the organization has made since its beginning,” said Tiberg. “Not only has she been an effective activist for research, education and awareness for the Syndrome, she has also helped families impacted by KdVS learn more about how to care for their children. We are deeply indebted to her and grateful for her service.”

Rounding out the board are Vice President Alayna Haynam of Marysville, Ohio; Treasurer Michael Cooper of Killeen, Texas, and Board Members Steven Tiberg of Aledo, Texas, and Angela de Jong of Memphis, Tenn.

“The organization has given me opportunities professionally and personally that will be fully honored,” Ralph said. “I appreciate the support from families, present and past KdVSF board members, and our Medical Advisory Board. I know the organization will continue to further its mission with devoted leaders to guide the way.”

For more information and to support Koolen-de Vries Syndrome, go to SupportingKdVS.org.

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