17 Nov

Concert Raises Awareness

This 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 […]

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4 Nov

Dr. de Vries runs marathon

The 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 […]

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15 Jul

Families Gather in Omaha, Nebraska

July 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 […]

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26 Mar

2018 – Australian KdVS Family Gathering

Australian 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

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13 Jul

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, 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 […]

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30 Sep

2016 – Sept 30-October 2 – KdVS/Unique Study Weekend

Friday, 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 […]

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7 Jul

2016 – July 7-9, Columbus, Ohio

The 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.

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11 Jul

2015 – July 9-11, Asheville, North Carolina

A 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. […]

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9 May

2015 – May 9, Lea Green, Matlock, Derbyshire

An 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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19 Apr

2015 – April 17-19, Gold Coast, Queensland

In April many Australian KdVS families came together for a fun filled weekend on the Gold Coast. Queensland. The Gold Coast is situated in South-East Queensland and was easy for families to access with 2 major airports at Brisbane and Coolangatta. A total of 12 families (45 people) attended the fun 3 days and there […]

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