Family Fun Day at Hooplas
Transcription
Family Fun Day at Hooplas
AUTISM & DEVELOPMENTAL MEDICINE INSTITUTE — A WHOLE NEW PERSPECTIVE S ummer 2015 ON THE EVALUATION & TREATMENT OF CHILDREN WITH SPECIAL DEVELOPMENTAL NEEDS Family Fun Day at Hooplas On Sunday, May 3, Geisinger’s ADMI invited families with fragile X to come to Hoopla’s in Muncy for an afternoon of fun, food, and friends. While Ian enjoyed the air hockey table, Cody and Dr. Thomas Challman were ringing hoops. Jacob liked the motorcycle game and his brother Liam enjoyed the indoor playground. Jacoby was a fan of the mini golf and Alex was a pro mini-bowler. After watching the races in Longshots Grill, Jesse played some Skee Ball. Everyone enjoyed pizza, wraps, and veggies in the party room where we all mingled and talked about some research opportunities for families with fragile X at ADMI. The family fun event was graciously funded by Neuren Pharmaceuticals, the sponsor of a clinical trial for males with fragile X who are 12 — 45 years old. ADMI is a site for the clinical trial. Contact Dr. Maggie King at 570.522.9438 or mking1@geisinger.edu if you are interested in being part of this important research. The fragile X family fun event was definitely a success, and we would love to do it again! Thanks to all who attended! Upcoming Events and Clinics 7/19/2015 7/19/2015 8/17/2015 8/30/2015 11/16/2015 Sensory Friendly Movie Rio, Lewisburg, PA Southeast PA Community Support Network Picnic, Ridley Park, PA Fragile X Clinic, Lewisburg, PA Southeast PA Phillies Game, Philadelphia, PA Fragile X Clinic, Lewisburg, PA About ADMI ADMI is focused on clinical care and cutting edge research to help children with special developmental needs. The vision of ADMI is to expand and seamlessly integrate clinical services, research, and education through a multidisciplinary team of providers and researchers, including specialists in neurodevelopmental pediatrics, genomic medicine, psychology, speech-language pathology, radiology, and education. Fragile X Clinics Since January 2014, ADMI has held six fragile X clinics. Thirty-six patients 2 — 26 years of age and their families have met with our team of specialists during these specialty clinics. Some traveled from out of state with many traveling more than two hours for their appointments. During the lunch break, parents had a chance to meet one another, share resources, and discuss plans for upcoming events and clinics. For some families this was their first chance to meet another fragile X family. Fragile X Family History Study We know how fragile X syndrome is inherited. Understanding the history on both sides of the family may help complete the overall picture. Receive a $20 Amazon Gift Card for providing your family history! With your help, Geisinger’s Autism & Developmental Medicine Institute seeks to predict treatment outcomes, predict symptom severity, inform genetic counseling, and improve clinical trial recruitment. For additional information, please contact Dr. Maggie King at mking1@geisinger.edu or 570.522.9438. Neuren Pharmaceutical Trial Researchers at ADMI are conducting a clinical trial sponsored by Neuren Pharmaceuticals to learn about an investigational medication for fragile X syndrome. This trial is a good fit for your child if he is a male between 12 and 45 years old, is able to swallow a liquid medication, and has some verbal ability. If your child takes part in the clinical trial, he will have study visits every 1— 2 weeks for a total of 8 study visits. He will be given medication or a placebo (fake medication), have blood and laboratory sampling, and have a physical exam. He will also have his fragile X syndrome symptoms and heart activity monitored. He will do three short activities including a computer-based activities to test cognitive abilities, a computer-based activity involving viewing pictures, and a language task which involves answering questions and telling a story from a picture book. For more information contact Dr. Maggie King at mking1@geisinger.edu or 570.522.9438. Contact Us Geisinger Fragile X Center Autism & Developmental Medicine Institute 120 Hamm Dr, Suite 2A Lewisburg, PA 17837 Clinic Coordinator: Barbara Haas-Givler, MEd, BCBA Phone: 570.522.6287 Fax: 570.522.9431 Email: bahaasgivler@geisinger.edu