JONATHAN
HOFFMAN, Ph.D. /
DAN MARINO CENTER ADDRESSES SUPPORT GROUP.
Dr. Jonathan Hoffman
of the Dan Marino Center at Miami Children's Hospital
was the guest speaker at a recent CFXF Support
Group Member luncheon, coordinated by Randy Green.
Dr. Hoffman spoke about the definition of stress,
the relationship between stress and health, and
strategies for positive stress management. He
and the attendees discussed some examples of the
biological, psychological and social systems which
impact on stress.
THANK YOU, JULIA AND KATHY
 As
do all our Parent Group Leaders, Julia Paul-Mondaizie
and Kathy Doring, take every opportunity to bring
the CFXF “word” to others. Kathy recently
represented us at the 5th Annual Developmental
Disabilities Awareness Day, held at the Boynton
Beach Mall and  sponsored
by the Florida Department of Children and Families.
This year's theme was, “Living Life to the
Fullest.” Julia motivated her family members
to buy CFXF cookbooks, who in turn motivated their
own friends, such that many cookbooks were sold
and many donations received. Thanks to all of
you for your hard work and dedication!!
HELLO FROM CARDIFF, SOUTH WALES
Helen and Tom Piper recently wrote us a letter about
their son, Max, and told us a little bit about him.
“Max is coming up to 5 in July. He’s
a lovely boy and coming on nicely, thank you very
much. Max attends a special assessment-school “The
Hollies” here in Cardiff, South Wales. His
class is mixed abilities special needs, and has
about seven children with one main teacher and two
teacher aids. He takes the Hollies bus in the morning
about 8:00am and returns about 4:00pm. Max is just
beginning to speak in sentences but sings quite
well and throws a mean stone into the river or sea.
His Mum and I are very proud of his progress. There
is a very active and supportive group here in the
U.K. The Fragile X Society, (www.fragilex.org.uk).
There isn't any formal organization in Wales although
we know some FX parents in the area and see them
quite often.
Best of luck with your efforts and let's keep in
touch." BUSY
MATTHEW HOLLIN
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NILDA
SIERRA - PARENT GROUP LEADER
 Nilda
Sierra, our newest Parent Group Leader, has really
“jumped right in.” Nilda introduced
us to Parent- to-Parent of Miami, Inc., who is
printing an article on us in their newsletter,
and with whom we will soon link websites. At Nilda's
request, her sister-in-law, Christine
Sierra, and her parents, Cristina and Julio Zaldivar
owners of Printing Unlimited of Florida (in Miami),
generously donated 5,000 flyers regarding National
Fragile X Awareness Day (July 22nd), which our
Parent Group Leaders distributed throughout the
area. Nilda is also translating and responding
to inquiries made to us by Spanish speaking fragile
X families.
Nilda is the mother of two boys, six year old
Christian, who is afflicted with Fragile X, and
thirteen year old Michael. Christian is a very
happy child who loves Barney, playing on his swing,
and playing on the computer. Her husband of 16
years is Miguel. She is a Licensed Customs Broker,
and also works for Parent-to-Parent of Miami,
Inc. Welcome aboard, Nilda.
MATTHEW GREEN
 Randy
Green shares with us an experience, familiar to
most Fragile X families:
“For many years after Matthew was born,
we had no idea what had been causing his delayed
developmental and behavioral problems. He was
placed in an early intervention program at the
age of 18 months and remained in special education
classes through his school years. At the age of
4 in 1987 we had him tested for Fragile X through
a chromosome test but the results were negative.
However, when he was 11, we had him retested using
a DNA test and found out that he is affected.
That’s when my quest to learn all about
fragile X started.
“Almost 18, Matthew can only read first
grade sight words and has poor handwriting, math
and social skills. He attends the PASS program
at Sheridan Technical Center where he is learning
functional and independent living skills and receives
daily community-based instruction and job training.
Matthew is a very independent young man and loves
to help around the house. He also loves to participate
in sports activities and has played Challenger
Little League, in various special soccer groups
and through Special Olympics has participated
in floor hockey, tennis, and gymnastics. He likes
to swim, play basketball and football, ride his
bike, and he recently acquired a scooter.”
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