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.

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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 […]

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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 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 […]

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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.

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7 Aug

Van Berg and his mother Eugenia Kim featured in a video series by the Youth Transitions Collaborative.

We are pleased to share the following video featuring Van Berg and his mother, Eugenia Kim. Van is 26 years old and was diagnosed with Koolen-de Vries Syndrome in 2007. This video is part of a video series by the Youth Transitions Collaborative about work-based experiences for people with special needs transitioning to adulthood.  

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7 Aug

Hayley’s Journey from Special Olympics to Carolina Cup

Check out this inspiring article about Hayley, who has Koolen-de Vries Syndrome and her Paddle boarding journey.

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7 Aug

Kool Kid Colby demonstrating his communication device.

Kool Kid Colby Tiberg demonstrates how he used his communication device in the classroom.

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7 Aug

Kool Katie models in the Runway of Dreams Fashion Show

Check out these photos of Kool Katie modeling in the Runway of Dreams fashion show. Her photo can also be found in the June 13, 2016 issue of People Magazine.

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