October 18, 2009

Educational Conference: Fragile X Syndrome: Strategies for Home, School and Community. Rutgers University, Newark, NJ. Dr Vicki Sudhalter, Dr. Peter Della Bella; Jennie Keenan, Lauren Moskowitz, Jenny Sammons.
Info: Fragile X Association of New Jersey: Paula Fasciano: Thefascianos@gmail.com and Fragile X Association of New York: Anita Inz, aainz@aol.com, Laurie Yankowitz 718-422-3271.
Registration brochure

Duke Study for women between the ages of 14 and 24

Talking to children about the genetic risk of fragile X syndrome can be difficult. Parents often worry about the potential harm genetic risk knowledge may have on their child's developing self concept and at the same time search for ways to help their child(ren) positively adapt to this information. Parents often ask us:

What is a good age to start talking to my children about the inheritance and genetic risk related to fragile X syndrome?
When should carrier testing be offered?

We are writing to you to tell you about a study that is trying to answer these important questions. We are asking adolescent girls and young women between the ages of 14 and 25 years and their mothers, who are members of families in which fragile X has been diagnosed, to participate. We are interested in interviewing girls who are carriers, girls who are not carriers, and girls who know only that there is a possibility that she could be a carrier. Although this study is focusing mainly on mothers and daughters, we know that sometimes a father is the parent who talks the most with his daughter(s) about fragile X syndrome. If that is the case for your family, please contact us as we would also like to talk with fathers/daughters.

Participation in this study will involve about 2-3 hours of your and your daughter's time. We will ask you both to complete several surveys and an interview. We expect that most of the interviews will take place in the Fragile X Clinic at Duke University Medical Center. However, if you and your daughter would like to participate but travel to Duke is not possible, please contact us anyway and we will try to accommodate you.

If you would like to learn more about this study please contact Shelly Galasinski at 919-668-1340, galas001@mc .duke.edu or Dr. Allyn McConkie at 919-681-1949, mccon006@mc.duke.edu . If you do not believe that this study is appropriate for you, but know of other family members or friends who might wish to learn more about the study, please share this information with them or encourage them contact us.

Thank you very much,

Allyn McConkie-Rosell, PhD,
CGC Assistant Research Professor Certified Genetic Counselor
Division of Medical Genetics

Gail A. Spiridigliozzi,
Ph.D.Assistant Clinical Professor Department of Pediatrics Department of Psychiatry and Behavioral Sciences

Ave M. Lachiewicz,
MDAssistant Clinical Professor Department of PediatricsDepartment of Psychiatry and Behavioral PediatricsDirector, Fragile X Clinic

How do Families Adapt Study

The experience of having a child with fragile X has a significant impact on families. Through the "Family Adaptation Study", we want to learn more about how families' lives are affected by having a child with fragile X . Don Bailey and his colleagues are conducting this study and hope to include a diverse group of families. Many of you heard Don Bailey speak at the recent NFX conference in Washington, DC.
While we have been fortunate to recruit a large number of familes with young children with fragile X (many whom participate in this list serv!), we have some specific families we would also like to include such as:
1. African-American families (with a child with the full mutation between the ages of 1 and 14 years)
2. Very young children with the full mutation (6 - 18 months old)
3. Mothers (of children 6 - 30 months old) who have not yet completed college courses or a technical degree

We are a very family-oriented group of researchers and will come to your home community to complete the assessment at a time convenient for you(weekends included!). If you participate, you will receive a summary of developmental testing results for your child and between $100 - $250 in appreciation of your time.

Please call Jane Roberts at 800-351-4603 or email at jane_roberts@unc.edu for more information.Thank you for your support!

Jane E. Roberts, Ph.D.
Investigator
Carolina Fragile X Project
FPG Child Development Institute
University of North Carolina
Chapel Hill, NC 27599-8040
Phone: (800) 351-4603; (919)966-0699
Fax: (919) 962-7463

Communication Study for boys and girls ages 10 - 15

We are recruiting families for a longitudinal research project designed to investigate the language and communication difficulties of children and adolescents who have fragile X syndrome. Children and adolescents with fragile X syndrome who are between the ages of 10 and 15 years are eligible to participate. Both males and females are needed. Participation would require visiting the Waisman Center on the campus of the University of Wisconsin-Madison. Families can be reimbursed for eligible travel expenses, including hotel and airfare, if necessary. Because the project is longitudinal, we will ask families to return for additional testing at yearly intervals for four years.
For more information and to learn if your child is eligible, contact Dr. Len Abbeduto (abbeduto@waisman.wisc.edu or 608-263-1737) or Susen Schroeder, M.A.( sschroeder@waisman.wisc.edu  or 608-263-5145) for more information.

This research is approved by a University of Wisconsin-Madison Institutional Review Board for the Protection of Human Participants. We will begin to see families in late November of 2004 and well into next year for their first visit.

Leonard Abbeduto, Ph.D.
Professor, Educational Psychology & Associate Director for Behavioral Sciences, Waisman Center
Waisman Center
University of Wisconsin-Madison
Madison, WI 53705
(608) 263-1737  

Research Study opportunity for 5-10 year old Fragile X girls

Cognitive Development Project
Girls with Fragile X Syndrome

Our project is designed to help us understand the development of cognitive and academic skills in young children. One component of the project involves following the development of such skills in girls with the fragile X full mutation. The project is a longitudinal one, meaning that each participant will be evaluated individually once per year, over the course of several years. We are currently recruiting girls who are either in Kindergarten, First, Second, or Third grade, and who have the Fragile X full mutation.

Participation will involve several hours of psychological and academic achievement testing, over one or two days. The testing will include measures of reading, mathematics, spatial reasoning, and other problem solving skills. Parents will receive a report of their daughter's test performance following each evaluation, if requested. The testing will occur at the Kennedy Krieger Institute in Baltimore, Maryland, or elsewhere, depending on your geographic region of residence. There is no charge to you for any of this testing.

If you desire more information, or if you wish to enroll your daughter in this project, please contact Dr. Michèle Mazzocco, Principal Investigator of this research project, at (443) 923-4125, or Anne Henry, Research Assistant, at (443) 923-4121. If you prefer, you may also e-mail us at henrya@kennedykrieger.org

There are no significant risks to participation, nor any direct medical benefits. Minor risks include finding some of the activities too challenging or too easy.