Harris Hollin



Harris Hollin
Founder, CFXF
Emeritus Director, NFXF

BOARD OF ADVISORS
Martin Blackman
New York, NY
Jennifer Jaques
London, England

Elissa Boory
Cherry Hill, NJ

Nick C. Jones
Marietta, GA

Jeffrey Cohen
W. Bloomfield, MI

Ray G. Kalil
Nashville, TN

Ofer David
Haifa, Israel

Joseph Kerzner
Toronto, Ontario, Canada

Rosalee Davison
Baltimore, MD

Allen Mason
Palm Beach, FL
Sheila Engelstein
Palm Beach, Florida
Alan H. Miller
Palm Beach,FL

Marti Gammon
Miami, FL

Moshe Modai
Tel Aviv, Israel

Randy Green
Pembroke Pines, Florida

Asher Naim
Jerusalem, Israel

Kimberly Grimmel
Deerfield Beach, Florida

Samuel J. Rosenfeld
Chevy Chase, MD

Joseph Gurwin
Great Neck, NY

Phyllis Siegel
Owings Mills, MD

Arnold J. Hoffman
Palm Beach, FL
Vi Werner
Minneapolis, MN
 
PARENTS' CORNER

CFXF Parent Group Leader Julia Paul-Mondaizie recently attended the 5th Annual Family C.A.F.E. Conference in Kissimmee, Florida. C.A.F.E. stands for Collaboration Advocacy Friendship Empowerment. Julia has provided us with the following summary of the activities.

Change of Address for CFXF

CFXF now has new offices. For the past few years, Board of Advisors member Mr. Alan Miller has been very gracious to donate office space to CFXF. Mr. Miller recently moved to smaller quarters and CFXF has moved as well. Mr. Allen Mason, also a CFXF Board of Advisors member, has donated office space to CFXF.

Our new mailing address is:
Conquer Fragile X Foundation
189 Bradley Place Suite 1
Palm Beach, FL 33480

Many thanks to both Mr. Miller and Mr. Mason for their generosity.

 

The CAFÉ Conference and Governor's Summit
By Julia Paul-Mondaizie

The 5th Annual Family CAFÉ Conference and Governor's Summit promised to be a forum for families of the disabled and self advocates to educate themselves on how to utilize the programs available as well as how to interact with professionals and policymakers. Through various federal, state and private funding sources, the CAFÉ is open at no charge to families and individuals, and grants are available to pay hotel and transportation costs associated with attendance. Over 5,000 families attended this year's conference, which was held May 30 to June 1, 2003.

The concept of the conference came from Mrs. Lori Fahey, current President of the Family Café. Mrs. Fahey found that after her child was born with special needs, she had more questions than answers. Her vision grew to become this annual statewide C.A.F.E. conference, attended by the Governor for each of the past five years. Through this conference, many hundreds of people each year learn how to access the services they need to improve their lives.

Each of the over 60 exhibitors paid a nominal exhibit fee for access to the conference attendees, consumers of their goods and services.

All attendees were given conference bags, which included a CD with conference information, Tee shirt and materials on each of the 120 breakout sessions. The 30-minute breakout sessions each focused on a different issue for people with special needs or for families of those with special challenges. The sessions were all well presented and very informative.

Rather than addressing a single disorder or need, the conference focuses on a number of broader topics: coping with special needs, accessing quality services and the needs presented by some specific disorders. Fragile X has never been addressed specifically, and onference organizers suggested that Conquer Fragile X Foundation consider a Presentation Proposal for next year.

REPORT FROM MALAGA, SPAIN

Dr. Yolanda de Diego Otero and her team from Fundacion Hospital Carlos Haya in Malaga (Spain), have informed us of some very positive results of the experiments about the application of specific compounds to reverse the pathological status of the fragile X mouse model. The team has submitted the results for peer review to a prominent scientific journal, which is very interested in the results. In addition, Dr. de Diego Otero will be presenting the results at the 11th Workshop on Fragile X Syndrome and X-linked mental retardation in Cyprus in late August.

UNITED WAY DONATION REMINDER
Anyone wishing to contribute to CFXF thru the United Way may do so by using our number 32236

 

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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