European Stars and Stripes (Newspaper) - October 22, 1991, Darmstadt, Hesse                                Fragile x a Little known cause Lor a Well known disorder by Denis m. Searl Esthe associated press in 1983, Jeannie Lancaster was worried about her oldest son s slow development and her paediatrician urged having the boy tested for fragile x syndrome a Little known and incurable form of inherited mental retardation. Quot we were aware of significant problems with our oldest son and had been looking for an answer because we were seeing similarities in our younger  said Lancaster of Denver Colo. Quot our paediatrician attended a seminar on genetic conditions where fragile x was presented. Based on the Tittle he heard he called us and said a i think we got  Quot she had never heard of fragile a but agreed to the test. Within Days her son and his brother and sister All had tested positive. Fragile x syndrome the most common Type of mental retardation occurs randomly in about one in 1,000 births. Once lodged in a family fragile x can produce generations of retarded men and women. Quot there was a lot of emotional roller coaster during that initial time Quot Lancaster said of the diagnosis in 1983. Quot it was compounded because my extended family had questions about their children i have a sister who has three children who also were diagnosed and another sister with two children who were diagnosed As having fragile  the Lancaster children were sent to Denver children s Hospital and its fragile x clinic headed by Randi Hagerman. A Pioneer fragile x researcher and widely published paediatrician Quot i was complaining so much about people not knowing about fragile x that or. Hagerman said lets do something about that a Quot Lancaster recalled Hagerman and or. Pamela Mckenzie director of children a Hospital s child development unit in 1984 created the National fragile x foundation Quot one of the biggest frustrations was the amazing Lack of knowledge of fragile x among the medical Community Quot Lancaster said. That is changing. Earlier this year the fragile x cell was identified by researchers at Emory University school of Medicine in Atlanta. The syndrome is characterized by a Quot fragile site Quot on one of the arms of the x chromosome. A female has two x chromosomes while a male has an x and a y a we found so Many fragile x patients in the Early 1980s. There was Little literature. Nobody knew about this disorder. There was a great demand for Quot information Hagerman said. Lancaster was the foundation s first newsletter editor and later was a director. The foundation began with an All Volunteer staff of parents and clinicians. Mckenzie remains president and Hagerman is scientific advisory Liaison. Sabrina Jewell we want everybody in the world to know about the condition of fragile x so that people who have it can be diagnosed and get the services needed or. Pamela Mckenzie smart recently became the foundation s coordinator and first full time salaried employee. The foundation now has 24 regional centers nationwide. Jewell smart s chief objective will be raising Money to support research capitalizing on the recent Emory University findings. A we want everybody in the world to know about the condition of fragile x so that people who have it can be diagnosed and get the services needed. We also want to promote research in both clinic and science areas to understand prevent and treat the condition Quot Mckenzie said. In the beginning Quot the main focus was to get As much information out to clinicians and professionals As Well As parents Quot Lancaster said Quot there was very Little to draw from very Little written for the Public on fragile a Quot although fragile x syndrome is known to genetic researchers most family doctors and educators Are unaware of it according to the foundation officials. Most of the estimated 200,000 americans afflicted with it have not been diagnosed they said. Males with fragile x syndrome have poor Eye Contact Are hyperactive  to learn to talk As toddlers and have speech and language limitations. Physical manifestations include a Long narrow face in adulthood Large ears extremely Large Testicles double pointedness and heart murmurs Quot the hardest Issue now is not so much dealing with my own children because they Are really super kids but the knowledge that they too can pass it on. That s harder for me a Lancaster said Quot i think its one of those things you come to terms with but you never get through because things will come up a crisis situations or just big stepping stones in childhood Quot Lancaster said. Quot and that will bring the reality of it Back so you Grieve All Over  family films Here than in the states it my question is regarding age requirements Lor cafes movie Heaters i recently was at the showing of a a rated movie. All around me were 10 and 11-year-Olds. While t know the parents can pay for them and leave do you think it is really of for cafes to allow the children to remain and watch these violent shows i thought the armed services promotes the family. Also Why is it that parents Are Able to bring infants into these showings voiced my opinion of a screaming baby to the manager of the Vogel Weh theater and he Felt there was nothing he could do about it. Kimberly Arnott Kaiserslautern Germany be sgt. Maj. Michel j. Bolduc he cafes Europe replies we do support family values by providing As Many gig and pg-13 movies As possible bul we Are limited by what the film companies make available to us in the first three months of 1990, 70 percent of the films reviewed by the motion picture association of America Paa received a ratings of the 32 films 28 percent were pm or pg-13 ratings Onty 1.5 percent of these films received a ratings because of the imbalanced ratings we repeat As Many g and pm rated movies As possible before they come out on video. Cafes is constantly on the Lookout for More suitable family oriented movies and will provide them whenever possible. A six month comparison january june 1990 of Paa film ratings and cafes film scheduling tells the Story. See Chart while an a rated movie May be objectionable to some individuals it May not be to others. It s the parents and not cafes who decide what movies their children can see. As Long As parents give permission for their child to see an a rated movie no matter How Young the child May be cafes must accept their discretion As to what they consider Best for their child. If the children at the movie were not misbehaving or creating unnecessary noise the theater manager was Correct in advising he could do nothing in the event of noise or behaviour problems theater management can take appropriate action. To write us readers action line is the readers Quot court of last resort Quot striving to answer some of the questions about life overseas in a military environment or questions about policies and guidelines when other avenues for answers Are not readily available. If you have a question and Don t know where to turn for the answer write to readers action line co the stars and stripes Apo 09211-4211. Alt letters must be signed and preference Wilt be Given to those seeking information of general interest to our readers movie rating comparisons film types As rated by the mpaa2.0%-i i 0.7%types of films scheduled by cafes 5.0% rated pm 13rated pm rated r rated h no 17 source cafes a amps Wes Booher Page 16 b the stars and stripes tuesday october 22, 1991