IDefine Blog
IDefine News  - April 15, 2022
Matt Lockwood - AUTHOR

It Takes a Village Returns

It Takes a Village, the popular webinar series is coming back bigger and better than ever.

In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine,  Koolen-de Vries Syndrome Foundation, and  SETBP1 Society are teaming up to soon offer new programs on the first Saturday of the month.

It Takes a Village is a program full of useful, interesting, and fun events for families, caregivers and children diagnosed with the three rare genetic disorders. Program topics will be driven by what families want. Potential programs will likely include musical therapy, social interactions, and relevant topics such as individualized education programs (IEP).

“As a volunteer-based non-profit supporting an ultra-rare community, we find that our resources, understanding of the disorder, and funding remain limited,” said Haley Oyler, president of SETBP1 Society. “We direct a high percentage of our collected funds towards research to better understand the impact of SETBP1-HD, the impacted pathways, and to bring us closer to finding targeted treatments. This results in our organization functioning on a tight budget with a small team. By partnering with other rare disorder groups, we combine forces and expand the size of the team working on the shared projects.”

Although the programs are held live, the goal is to create a shared library of interactive educational content that each organization can offer on its website.

“The KdVS community is filled with an amazing open-network of families,” said Ashley Fortney Point, Koolen-de Vries Syndrome Foundation president. “We are just waiting for the team of researchers to find therapeutics to improve the lives of all individuals living with KdVS.  Through this partnership, we can pull from each community’s knowledge-base to learn more and grow together.  When one of us progresses, we all win!”