Harris Hollin



Harris Hollin
Founder, CFXF
Emeritus Director, NFXF

PUBLISHED FOR FRIENDS OF CONQUER FRAGILE X FOUNDATION
Fall 2006 Newsletter

PARTICIPATE NOW IN A SLEEP STUDY
CONDUCTED BY THE FRAGILE X CENTER
AT PITTSBURGH CHILDREN’S HOSPITAL

The Center is conducting a study on the sleep patterns and
habits of children with Fragile X syndrome. Participation
in this study can be achieved by mail, fax and email from
anywhere in the country. Children ages 3 years to 17 years,
11 months either full or premutation who may or may not
have sleep problems are eligible and encouraged to
participate.
The role of parents will be to complete three
questionnaires in the home; a general information sheet,
bedtime routine information sheet, and one questionnaire
on sleep habits. It will take approximately 15-20 minutes
to complete these three questionnaires.
Parents are then asked to complete sleep diaries on their
children in two-week cycles, with entries every morning
and evening. These brief entries take less than 5 minutes
per day.
If you are interested in participating in this study please
contact Rebecca Kronk, MSN, CRNP at the Fragile X
Center at the Children's Hospital of Pittsburgh, 412-692-
7027, becky.kronk@chp.edu. You will need to provide
your address and contact information, and child’s age. Ms.
Kronk will provide you with a consent form and, once
they receive your signed consent, they will follow up by
sending you the full instructions and all necessary forms.





In February, CFXF advisory committee member Brenda Finucane and parent Cristy Hollin gave a presentation about fragile X syndrome to over 300 first year medical students at the Philadelphia College of Osteopathic Medicine. The students were very enthusiastic and eager to learn about the scientific and medical aspects of fragile X, as well as the impact on the family.
Matthew, Cristy’s 13 year old son with fragile X syndrome, was present to answer questions from the audience. Matthew showed great poise in front of the large crowd, calling on students when they asked questions and responding like a pro with the handheld microphone. Toward the end of the presentation, there was hushed silence when Matthew went to the podium and recited a speech and sang a song from his upcoming bar mitzvah. Many of the students had tears in their eyes as Matthew spoke, realizing the countless hours of practice and effort that had gone into that moment. The presentation had accomplished its purpose: many of those future doctors will always
remember what they learned about fragile X syndrome.

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Harris Hollin, Founder ~ Karen Fay, Past President
PO Box 37 ~ Walnut Creek, CA 94597
Tel: 925-938-9300 x1
Fax: 925-938-9315
Email:natlfx@fragilex.org
Web: www.fragilex.org

NFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 84-0960471
CFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 65-0910605