Five Conquer Fragile X Foundation parents and two of their fragile X affected young men, plus two CFXF staff members attended the conference along with over 800 others. CFXF is proud to have sponsored the presentations of Dr. Michael Fry of Technion-Israel Institute, Molecular Advances in Fragile X and Dr. Giovanni Neri, of the University Cattolica in Rome, Italy, Overview and Update of X-Linked Mental Retardation. Other CFXF grantees made presentations at the conference, including Dr. Gary Bassell who spoke on Neurobiology. One of CFXF’s most active families, the Dorings, also made presentations to the crowd; Kathy and Jonathan spoke on the Recreation and Sports panel and they also addressed the group on Living with Frax-e. Several of our Scientific Advisory Board members, including Dr. Robert Bauchwitz, Dr. Jonathan Cohen, Dr. Pietro Chiurazzi, and Dr. Randi Hagerman also made presentations at the conference.

CFXF President, Harris Hollin, and his lovely wife, Sande, sponsored a very special luncheon to celebrate the conference for CFXF families, grantees, Scientific Advisory Board members, and other supporters and friends. We are proud to have hosted the NFXF President Jeffrey Cohen, FRAXA President, Katie Clapp, and FRAXA’s very own David and MaryBeth Busby at that luncheon. The Hollin’s special guest was Dr. James W. Hanson, Chief of the Mental Retardation and Developmental Disabilities Branch of the National Institute of Child Health and Human Development, of the National Institutes of Health.

Our sincere congratulations go to all those from the National Fragile X Foundation, staff and volunteers, that worked so hard to give us all such a wonderful opportunity to share information and each other’s company and friendship. They did a terrific job and we are looking forward to the next conference, July 2004 in Washington, DC!

INTERVIEW WITH KAREN PAPE

In the July issue of our newsletter, we told you about Karen Pape, M.D., a Toronto Neonatologist and lifelong athlete who developed an innovative approach to the treatment of children with a wide range of neurological afflictions. The following brief interview with Dr. Pape was conducted so that she could share with fragile X families her TASC approach to treatment.

CFXF: Dr. Pape, please briefly describe your company and what you do.

Dr. Pape: TASC used to mean Technology Assisted Self Care and the founding part of the program was to demystify the technology used to grow and strengthen muscles. In late 2001, I sold the equipment side of the business to a Texas company that still distributes the equipment. I renamed the TASC Network to mean Technology, Attitude, Systems, and Coaching. In short, my business is to teach parents and professionals the importance of structuring, timing and sequencing therapeutic interventions of all types to maximize the abilities of the brain at all of it’s various developmental stages. This approach allows patients to maximize the benefit they receive from all their therapies.

CFXF: How can this be applied to fragile X children and adults?

Dr. Pape: TASC and the 20:4:80 Program teach parents how to become the head coach for their child, setting significant 4 year goals and manageable 1 year action plans. The family is the force for the child achieving their Personal Best. The program is directed to needs of parents and children, but using these principles will also help the adult. The goals are harder to achieve, but still possible.

CFXF: What is the best way to be sure that this approach is used at school?

Dr. Pape: Each child has the benefit of the Individualized Education Plan development process, but few parents go into the annual IEP meetings with a clear action plan for that year. If the parents know where they want to be

in 4 year “chunks”, then it is relatively simple to reframe a lot of it into “educational” need. Teachers are a good example of why the planning has to be the family responsibility. Even if you have the world’s best teacher for your child, they won’t be your child’s teacher three years from now.

CFXF: Where can we learn more about the application of this approach to FX children?

Dr. Pape: The best way to learn about the program and how to apply the principles to your own situation is to attend one of the seminars. The Program teaches 20 years of training or preparation 4 (for) 80 years of life - or “20:4:80”. The next scheduled seminar will be held on January 25-26 at Texas Children’s Hospital in Houston. There will be one in LA in the fall, but the date has not been finalized.

Anyone wishing to contact Dr. Pape or to learn more about the TASC program may link directly to Dr. Pape’s website through www.cfxf.org