Celebrating 35 Years

Scheduled Presentations

(Topics are NOT COMPLETE AND NOT IN ORDER of the actual schedule and may be subject to change. We are still arranging speakers.)

  • RESILIENCY THROUGH STRESS MANAGEMENT AND LIFESTYLE MODIFICATION SKILLS  – Presented by Eric Riklin a graduate student in Clinical Psychology Doctoral Program at Fordham University. Currently, Mr. Riklin conducts research examining the psychosocial needs of adolescents with craniofacial conditions and determining efficacious psychotherapeutic interventions for this population. He has also dealt personally with craniofacial conditions and has had over 24 surgeries.
  • UNDERSTANDING EMPLOYMENT RIGHTS: ADA in the Workplace  – Please join Hannah Walsh, staff attorney with Equip for Equality’s Employment Rights Helpline, for a presentation on the rights of employees with disabilities under the Americans with Disabilities Act and other federal and state laws. Topics include requesting reasonable accommodations, disclosing your disability, and the right to be free from discrimination.
  • SUPPORTING WELL SIBLINGS – Summary “Dr. Jill Weissberg-Bencell, Professor of Psychiatry and Behavioral Medicine at Northwestern University and Lurie Children’s Hospital of Chicago  will discuss the family stressors of having a child with a chronic disorder, the effect on siblings, and provide strategies and advice.”
  • STRATEGIES FOR WORKING ON NF EXECUTIVE FUNCTIONING THROUGH PLAY – Presented by Alix Tonsgard an Early Learning Specialist of the DuPage Children’s Museum.
  • NF1 OVERVIEW/CLINIC INFORMATION – Neha Patel MD, from the University of Wisconsin/American Family NF Clinic in Madison will give an overview on NF  and inform people about her clinic in Madison.
  • CARE GUIDELINES FOR ADULTS WITH NF1 – Presented by David Stevenson MD, Professor at Stanford University in the Division of Medical Genetics and contributor to the new publication on Care Guidelines in Adults with NF
  • NF2 SESSION ON FACIAL RETRAINING – Presented by Jackie Diels, OT,  a leading authority on facial neuromuscular retraining (NMR), a non-surgical therapeutic approach to the treatment of facial paralysis, paresis and synkinesis.
  • HANDS-ON PLAY EXHIBITS – Jill Samonte, Accessibility & Inclusion Specialist from the DuPage Children’s Museum, will be on the premises with hands-on portable and tabletop exhibits for the children and parents to interact with such as super big Tinker Toys.
  • NF2 in Pediatrics –  Robert Listernick, MD from Lurie Children’s Hospital will share his clinical experiences and advice for NF2.
  • NF2 and Upcoming Clinical Trials – James Tonsgard, MD from the University of Chicago will update the group on current and upcoming NF2 clinical trials.
  • Challenges of Finding Adult Care – This will be an open discussion with a panel of physicians, and patients and caregivers in the audience. (Will run concurrently during Supporting Well Siblings)
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