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  • Children's Neurodevelopment Center

  • Support Groups

  • Spina Bifida

    The Spina Bifida Support Group, also known as "Spinal Crew," is a support program for families of children with spina bifida. The group meets on the third Tuesday of the month. Group activities include guest speakers, off campus trips, and a catheterization group. Loneliness, isolation, girls "cathing" in public, social issues, bullying, and fashion are among the key topics covered.

    • Contact: Barbara Crosby 401-444-3686

    Families and Caregivers of Children With Special Health Care Needs

    The support group for families and caregivers of children with special healthcare needs is presented in partnership with Rhode Island Parent Information Network and Family Voices. The group meets on the first Monday of the month

    • Contact: Lisa Landry 401-444-8485

    Muscular Dystrophy

    The muscular dystrophy support group is sponsored by the Muscular Dystrophy Association and welcomes adults and children. The group discusses their concerns and support each other. Featured speakers have included physicians, lawyers, psychiatrists and equipment vendors. Muscular dystrophy patients and their families share their life experiences. The group meets bi-monthly on Wednesdays from 6 to 8 pm. Call for the meeting dates.

    • Contact: Deborah Bartone, RN 401-444-5230

    Phenylketonuria (PKU)

    The PKU support group is a multi-cultural group of individuals, concerned parents, family members and friends supporting, educating and advocating for people affected by PKU. Discussions include such topics as diet options, legislative policy, and resources. The group meets on the second Wednesday of the month. PKU-friendly refreshments are served.

    • Contact: Julie Johnston, RD, LDN 401-444-8491

    Osteogenesis Imperfecta (OI)

    The OI support group is open to children and adults with OI and their family members.  This support group is intended to provide support and shared experiences for persons living with OI across the lifespan as well as to their spouses, parents, siblings and children. The OI Support Group is part of the larger Osteogenesis Imperfecta Foundation, an international resource on OI.  The group meets on the first Thursday of the month, from 6:30 to 8pm.  Please contact one of the listed support group coordinators to confirm the next meeting.

    • Contact: Susan Kortick, RN 401-444-5794

    For more information about any of the programs please call 401-444-5685.

     

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