Are there any parent support groups out there for special needs/medically fragile children who have their medical care through Golisano Children's Hospital and the U of R? I would love to know of one or find other parents who would be interested in starting one with me, so we can share our experiences, resources and other valuable information. Please let me know if there is any interest. I think we could all really benefit from something like this. I wish that Strong had something like Care Connection like we had at CHKD in VA. They provided us care case managers to help advocate and make things run smoother in regards to care planning and assistance with any issues we were having. I know Strong has patient advocacy, but that just is not the same. Any thoughts or ideas would be appreciated.

Hi, Kari, I'm the director of Daystar for Medically Fragile Children, a pediatric day-respite center for children with special health care needs in Rochester. We run a Family Support Services program and host monthly Family Social Hours to help families connect with one another and share experiences. Your child does not have to be enrolled in our respite programs to participate. If you're interested, check out our website at www.daystarkids.org and/or contact us at 585-385-6287.

Best wishes!
Kim Condon, Executive Director
Daystar for Medically Fragile Children, Inc