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My name is John Roseborough and I am the regional representative for Kansas. My daughter Elsie was born in 2012 and was diagnosed at age 3. I have been affiliated with PRISMS since 2016, soon after my daughter was diagnosed with SMS. PRISMS has been a source of information as well as a supportive community. I’ve gained so much learning from the publications and two conferences I’ve attended to date, and I’ve made many friends through the organization who have helped us come to terms with the diagnosis and helped us on the SMS journey.
My hope is to serve others in the community by being available as a point of contact for anyone diagnosed. I can share the resources that have helped us. My wife Joanna and I can connect families with ourselves or others who can provide empathy and if requested, guidance on things we or others have some experience with. We want to help others as there are so many uncertainties and challenges (and at times, joys) that come with the SMS diagnosis. We see a need for families in Kansas to meet up face to face periodically (establish more frequent social connections), and perhaps we can help with fundraising for PRISMS too!
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Callihan joined the PRISMS team as a Regional Representative for Central New York in September 2018. She’s very familiar with Smith-Magenis Syndrome. Her older sister, Briahna who is 28, was diagnosed with the disorder at 11 years old. Callihan and her family then turned to PRISMS conferences to get a quick education so they could mold their life to best fit Briahna’s needs. Conferences showed them that they weren’t alone in the world when it came to seeking help, so Bri could live the best life possible.
17 years later, they still go to conferences to make sure they’re up to date on any new developments. Callihan has been a caretaker for her sister since age 12. Bri went to her prom, she also went up to her college and stayed in the dorms. It’s very important to Callihan that her sister gets to experience the same joys in life that she does. Callihan has 26 years of experience growing up with her sister. She knows her sister’s needs and she knows how to be her sister’s voice, and she wants to do the same for other families in Central New York. She received education through PRISMS, and she’s excited to share that experience with families across her region.
Connect with Callihan