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 [email protected] 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 [email protected] 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 [email protected] 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: [email protected]