On Thursday, October 29, we hosted a conversation with Dr. Nael Nadif Kasri to discuss the latest research on stem cells and drug therapy. Over 100 people attended the webinar live through Zoom or on Facebook Live. We are very fortunate to have involved and personable researchers that care about KdVS research and our community. […]
READ MOREThis year, the KdVS Foundation welcomed the Speirs family into its global KdVS community. Andy and Virginia Speirs studied harp and cello performance at the University of Utah. Excited about the upcoming 2019 Patient Advocacy Summit in Park City, Utah, they organized and performed a harp/cello music concert to help raise funding and awareness for […]
READ MOREThe Koolen-de Vries Syndrome Foundation and The Kool Kid Alliance are thrilled to have had the support Dr. Bert de Vries as he ran the New York City Marathon on November 4, 2018 to raise awareness for Koolen-de Vries Syndrome! Dr. de Vries approached both organizations about finding a way to use his race to […]
READ MOREJuly 2018 saw 32 KdVS families gather in Ohama, Nebraska, USA. Hosted by Nicholle and Tony Reisdorff from Papillion, parents to Seth, along with Leslie and Neal Deremer from Nebraska City, parents to Ethan, and Kelly and Steve Walsh from Des Moines, Iowa, parents to Beckett. Local artists greeted families during the kick-off event at […]
READ MOREAustralian KdVS Family Gathering Where: Novotel Twin Waters Resort, Sunshine Coast – Queensland, Australia. Click here to view resort website. When: October 11th – 14th 2018 All enquiries to Andrea Smith Phone: +61 407 675 630 Email: ansmith@komatsu.com.au Mail: PO Box 1016 Camden NSW Australia 2570
READ MOREMemphis, Tennessee July 13 – 15, 2017 The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in Memphis, TN. The event’s goal is for patients, caregivers and advocates to walk away equipped with information, ideas and goals to help form an action […]
READ MOREFriday, September 30: Hotel check-in, informal evening with families, doctors and professionals. Evening meal provided through funding. Saturday, October 1: Breakfast (included with room). Morning – Q&A with Dr. Koolen and his colleague. Lunch – Provided through funding. Afternoon – Workshops (More details to follow). Sunday, October 2: Breakfast – Included with room. Checkout. Picnic […]
READ MOREThe 2016 Koolen-de Vries Syndrome Gathering was held in Columbus, Ohio, July 7-9, 2016. The gathering was predominately a social event with lots of time for networking and visiting with other KdVS families.
READ MOREA USA Koolen-de Vries Syndrome gathering was held July 11, 2015 in Asheville, North Carolina. Many families arrived a few days early to attend additional fun activities. Ted and Stephanie Needham hosted the gathering and it was clear that they spent a lot of time fundraising and planning to host a huge number of families. […]
READ MOREAn informal KDVS Europe gathering is planned for May 9, 2015. If you are interested, please contact Mandy at mhazelgrave@aol.com. Check out this link for more details. Do you have photos from the event that you’d like to share? Please use our Contact page to let us know! We’ll contact you to get the photos […]
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