News Archives - Koolen-de Vries Syndrome Foundation

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 […]

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 […]

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 […]

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

8 Aug

Following her Heart

With 50-50 odds that her child may also be diagnosed with Koolen-de Vries Syndrome, England’s Lisa Collins pursued her dream of being a mom.

14 Jul

2017 KdVS Drug Therapy Research Update

Location: 2017 Koolen-de Vries Syndrome Patient Advocacy Summit Date: July 14, 2017 Katrin Linda, a PhD student researching at Radboud University Nijmegen, spoke about Koolen-de Vries Syndrome cellular and molecular research. To more easily understand the role that the KANSL1 gene plays, Katrin presented a simplified scenario. Working efficiently is easier when working in a […]

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 […]

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 […]

7 Aug

Check out this awesome video of Sam’s involvement as a volunteer for The Friendship Circle of Central Jersey

Sam, who is living with Koolen-de Vries Syndrome, is such an uplifting and inspiring young man! The Friendship Circle is dedicated to creating a supportive community for special needs children, their families and high school volunteers, giving them the opportunity to unearth their potential, make positive life choices, and realize their dreams. Watch the video […]

7 Aug

Akron Children’s Hospital tells Miranda’s Story

Kool Kid Miranda’s story was featured on Akron Children’s Hospital’s website, where they discuss their “little fighter” being one of the rarest of the rare. Check out her story here.