DR. RANDI HAGERMAN AND
MS. LOUISE GANE VISIT SOUTH FLORIDA
The South Florida Fragile X Resource
Group organized a series of events around a
May visit to South Florida by Dr. Randi
Hagerman and Ms. Louise Gane of the MIND
Institute at the University of California at Davis
Medical Center. OnThursday evening,May 17,
Randi and Louise presented “The Autism-
Fragile X Link, The Genetic, Psychological and
Therapeutic Interventions for Fragile X and
Autism” at the Sister Innocent Conference Center at Holy Cross Hospital in
Fort Lauderdale, FL. Over 100 parents, family members, friends, teachers,
counselors and psychologists were drawn to the very informative talk.
Fragile X-focused discussions such as this are rare in South Florida andmany
school staff turned out to hear the experts. Many of the attendees bought
raffle tickets for prizes donated by members of the Resource Group and the
local community, and the proceeds will go to Fragile X research.
Scientific Advisors
Robert Bauchwitz, M.D., Ph.D.
Columbia University
New York, New York
Pietro Chiurazzi, M.D., Ph.D.
University Cattolica
Rome, Italy
Jonathan Cohen, M.D.
Monash University
Melbourne, Australia
Jason Dictenberg, Ph.D.
Yeshiva University
New York, New York
Gideon Dreyfuss, Ph.D.
University of Pennsylvania
Philadelphia, Pennsylvania
Assam EI-Osta, M.D.
The Baker Institute
Melbourne, Australia
Brenda Finucane, M.S.
Elwyn Institute
Elwyn, Pennsylvania
Randi Hagerman, M.D.
University of California at Davis
M.I.N.D. Institute
Davis, California
Prof. Giovanni Neri, M.D.
University Cattolica
Rome, Italy
Allan L. Reiss, M.D.
Stanford University
School of Medicine
Stanford, California
Haruhiko Siomi, Ph.D.
Institute for Genome Research,
University of Tokushima
Tokushima, Japan
Michael Tranfaglia, M.D.
FRAXA Research Foundation
Newburyport, Massachusetts
Karen Usdin, Ph.D.
National Institutes of Health
Bethesda, Maryland
On Friday morning May 18, Randi and Louise presented a program on Fragile X Syndrome at a breakfast meeting for doctors and therapists at Memorial Regional Hospital in Hollywood. During the day on May 17 and 18, Randi and Louise saw 16 local fragile Fragile X families, some for an initial assessment meeting and others for follow up discussions. On the evening of Friday, May 18, over 31 families attended a undraising dinner and auction for the benefit of Conquer Fragile X Foundation, National Fragile X Foundation and the MIND Institute.
A big thanks to all our families, especially Randy and Les Green, for arranging the programs and family meetings and for the splendid and successful dinner and auction at Bubba Gump’s Restaurant in Fort L.auderdale. And, thank you to Dr. Randi Hagerman and Ms. Louise Gane for their tireless devotion to fragile X families. Although they spent just a few days here with us, Randi and Louise’s visit, as always, was inspiring and energizing to our families.
THE FIRST FLORIDA FRAGILE X RESEARCH CONFERENCE
On April 15 and 16, 2007, Conquer Fragile X Foundation and the Scripps Research Institute were proud to sponsor the first Florida Fragile X Research Conference, entitled “From Mechanisms to Medicine” in Palm Beach Gardens, Florida. Despite one of the year’s worst storms affecting the East coast of the United States on the evening before and into the first day of the conference, everyone that committed to attend, in fact joined us. This first-of-it’s-kind conference was planned and developed by an organizing committee which comprises CFXF Scientific Advisors, Dr. Karen Usdin of the NIH, Dr. Giovanni Neri of the Catholic University in Rome, Dr. Gary Bassell of Emory University and Dr. Claes Wahlestedt of The Scripps Research
Institute. The day-and-a-half conference provided the unique opportunity for young investigators to present their work directly to their peers and to senior investigators as well as formal and informal opportunities for meetings between peers, mentors, and speakers. Among the countries represented at the conference were Italy, Spain, Belgium, and of course, every corner of the United States. Guest speakers included Dr. David Nelson of Baylor University, Dr. Fabrizio Gasparini of Novartis, and Dr. Randall Carpenter of Seaside Therapeutics. We are grateful for the support of Abbott Molecular, Inc., who provided some
sponsorship of the event.
Five Awards Given
As the focus of the conference has been placed on researchers new to fragile X, our organizers sought an innovative way to reward the exceptionally high quality work and stimulate excitement and maybe even a little competition among our conference speakers and poster presenters. The committee decided to make available a total of five “CFXF Rising Star” awards.Three awards of $1,250 each for the best oral presentation and two $750 awards for the best poster presentation. The awards committee, Dr. Karen Usdin, Chief, Gene Structure and Disease Section,National Institute ofDiabetes, Digestive and Kidney Diseases, Dr. Claes Wahlestedt, Professor of Biomedical Sciences and Director of Pharmacogenomics at The Scripps Research Institute, Professor Giovanni Neri of the Institute of Genetic Medicine at the Catholic at the Catholic University in Rome, Dr. David Nelson, The Cullen Foundation Professor in the Department ofMolecular and Human Genetics at Baylor College ofMedicine andDr.Gary Bassell, Associate Professor,Dept. of Cell Biology and Neurology at Emory University School of Medicine had the unenviable task of selecting the “best all around” presentations from among all the presenters.
The three $1250.00 CFXF Rising Star awards were given for the best oral presentation to Dr. Gul Dolen of MIT, Dr. Usha Narayana of Emory University, and Dr. Ravi udashetti, of Emory University and the two $750.00 CFXF Rising Star awards were given for the best poster presentation to Dr. Daman Kumari
of the NIH and Dr. Silvia de Rubeis of the University of Rome, Tor Vergata. Congratulations to all our winners and thank you to all our speakers.
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