| Joint
Fundraiser
Conquer Fragile X Foundation and
FRAXA Research Foundation held a joint fundraising
event at the Green Valley Country Club, Lafayette
Hill, Pennsylvania, which was attended by more
than 350 individuals, the maximum that the facility
could hold. The featured activity was a formal
fashion show provided by Saks Fifth Avenue - and
there were a broad range of auction items donated.
Because of the outstanding efforts of Cristy Hollin
and her Chairpersons: Marla & Robert Friedman,
Nicole & Todd Kendall, and Jamie & Warren
Klein, the event was an exceptional success. Of
the funds that were raised, the net funds were
split 50/50
and each organization received $59,000.
A
Letter from Mary Beth Busby |
 We
received the following letter from Mary Beth
Busby, Co-Founder and Vice President of FRAXA
Research Foundation and the wife of David
Busby, a Washington legislative advisor for
FRAXA Research Foundation. January 22, 2001
Dear Harris,
Thank you for sending the articles on young
Jonathan Doring. What an honor! He must
be a terrific young man, and I am sure his
parents are very proud.
Needless to say, getting press coverage
is one of our most difficult challenges,
so you should feel very pleased. Congratulations.
Warmly,
Mary Beth |
Cookbook Update
Our Parent Group Leader, Randy Green, and Tonii
Kelly have done an outstanding job on the Conquer
Fragile X Cookbook. If you wish to purchase cookbooks
for yourself and as gifts, please send a check
for $12 (which includes shipping) for each book
to CFXF Cookbook; Randy Green; 1942 N.W. 167th
Terrace; Pembroke Pines, Florida 33028. Please
include your name, address, phone number, e-mail.
If you have any questions, you may contact Randy
at mathmattx@aol.com or 954-433-5413.
|
Jonathan Doring Speaks
at Fundraiser
 Jonathan
Doring, a twenty year old young man afflicted
with Fragile X and the son of Kathy Doring, a
Parent Group Leader with Conquer Fragile X Foundation,
addressed the Joint CFXF-FRAXA Fundraiser.
“What does having Fragile X syndrome mean
to me? If there was a cure, how would my life
be different? I would be starting my junior year
at college right now. .... But without a high
school diploma you cannot attend college.
When I was diagnosed with Fragile X syndrome
.... teachers told my parents I could not learn.
..... A social worker told my mom to place me
in an institution. She didn’t do this and
I am so glad. I still get confused and frustrated,
but I’m learning how to work these feelings
out. .... My parents have always focused on my
strengths and abilities.
My parents also believed I could learn more and
become a better student if I was mainstreamed
in regular education classes. When I was in the
7th grade, I was included in a math and social
studies class. Every
year we added another regular education class
until I was fully mainstreamed. .... I still have
one more hurdle to overcome. The High School Competency
Test. In Florida, a student must pass this test
to receive a regular high school diploma. I have
not passed it yet, but I will keep on working
until I pass it. ***
On behalf of The Conquer Fragile X Foundation
and FRAXA, I would like to thank all of you for
your very generous support. With your generosity
some day there will be a cure for Fragile X Syndrome
and some other young man’s dream of going
to college and having a normal social life will
be a reality. Thank you very much.”
*** On Thursday, December 14, 2000 having passed
the state-required test, after 8 tries, Jonathan
Doring received his high school diploma.
Jonathan Doring’s important story of courage
and fortitude were acknowledged in full length
articles by two major Florida newspapers.
|
