Alayna, Author at Koolen-de Vries Syndrome Foundation

3 Mar

2019 RARE Patient Impact Grant

The Koolen-de Vries Syndrome Foundation is proud to have been selected from among some 200 other applicants to receive the 2019 RARE Patient Impact Grant from Global Genes. Launched in […]

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 […]

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 […]

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 […]

26 Mar

2019 Patient Advocacy Summit

KdVS Foundation is excited to announce that our 2019 KdVS Patient Advocacy Summit will be held in beautiful PARK CITY, UTAH, JUNE 27TH-29TH at the Newpark Resort! Our wonderful host […]

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 […]

12 Nov

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 Supporting Families with Koolen-de Vries Syndrome (SFKdVS) 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.

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 […]

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 […]