Cincinnati

News, events and information from the Cincinnati support group.

Connecting in Cincinnati

If you would like to connect with other local families through events such as social gatherings, support groups, educational trainings or local fundraisers, please contact Sara Bitter at (513) 773-7119 or sarabitter@yahoo.com or Laurie Lupinetti (513) 315-0518  or laurie.lupinetti@gmail.com

Cincinnati Fragile X Syndrome Support Group

Cincinnati Children’s Hospital Medical Center provides support for patients and families through the FXS Support Group. A new board has been formed for the Tri-State Fragile X Alliance:

o   President: Joe Garera

o   Vice President: Paul Heisel

o   Secretary: Laurie Lupinetti

o   Recording Secretary:  Kaela O’Brien

o   Treasurer: Amy Heisel

o   Professional Outreach: Ava Koren

o   Honorary Chair: Dr. Craig Erickson

o   Members at Large: Jim/Jill Doyle, Beth Lake, Sara Bitter

Meeting Location

  • Cincinnati Children’s Hospital, Division of Developmental & Behavioral Pediatrics
  • 3430 Burnet Avenue
  • Cincinnati, OH 45229-3039
  • 5th Floor, Conference Room 5.601
  • (There is plenty of FREE parking, park on 3rd floor of garage and take elevators to 5th floor)

Additional Support

Facebook Group – “Cincinnati Fragile X Support Group

Cincinnati Children’s Hospital Fragile X Research and Treatment Center

Dr. Craig Erickson is seeing patients at the Fragile X Research and Treatment Center at  Cincinnati Children’s Hospital. For an appointment, call the clinic coordinator, Katie Friedmann, RN at (513) 636-0523 or email at katherine.friedmann@cchmc.org

  • Cincinnati Fragile X Research and Treatment Center
  • Cincinnati Children’s Hospital Medical Center
  • 3333 Burnet Avenue, MLC 4002
  • Cincinnati, OH 45229
  • (513) 636-0526
  • fragilex@cchmc.org

Staff Addition and Study News

The Cincinnati Fragile X Research & Treatment Center who like to welcome Rebecca Shaffer, PsyD to our clinic team. Dr. Shaffer is a psychologist with specific experience working with persons of all ages with fragile X syndrome. Dr. Shaffer is an expert in multiple modalities of therapy including behavior therapy, family therapy, and cognitive behavioral therapy. She additionally has specific post-doctoral training in Applied Behavior Analysis therapy techniques. Dr. Shaffer previously worked with Dr. Erickson at the former Riley Hospital Fragile X Clinic in Indianapolis from 2011-2012. Dr. Shaffer will also be able to see adult carriers of the fragile X permutation should they have their own therapy needs. To schedule with Dr. Shaffer or for more information about her services, families can email fragilex@cchmc.org or call our direct number 513-636-0523. Families will be able to schedule visits with Dr. Shaffer and with Dr. Erickson within the same day.

Expressive Language Study:  The Cincinnati Fragile X Clinic is working to train psychologists on how to obtain expressive language samples from youth age 5 to 14 years with fragile X syndrome. If you have an interest in assisting with this, the language sampling takes only 20 minutes and the Cincinnati Fragile X Clinic are happy to accommodate your schedule to facilitate this testing. Email fragilex@cchmc.org if you have interest in participation.

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