

		Welcome to this edition of the Down Syndrome Support Newsletter! I would like to send out a BIG Thank You to all who came out for the 1st DS Support Buddy Walk. We were able to raise over $23,000 and had over 400 in attendance! We couldn't have asked for a better first year! Please remember we have our next meeting on Saturday, November 15. It will take place at the Plainfield Library. We will discuss the future of DS Support and future projects the group will take on. I will also have Calendars available for purchase (see below). See you soon, Jennifer aka 'Brandon's Mom' If you have a story, event, or happening email it to info@dssupport.net and we can include it in the next edition.
		Calendar DS Support November Meeting -- New Location Nov. 15 at the Plainfield Library 10:00 am-12:00 noon Meeting downstairs in the Board Meeting Room Possibilities Wednesday, December 10–13, 2003 Chicago Hilton and Towers The TASH conference is the largest and most progressive international conference that focuses on strategies for achieving full inclusion for people with disabilities for more information call 800-482-8274 or www.tash.org/2003conference All of these calendar items can be found at www.dssupport.net/local_happenings.html Know of an event or other news? Email info@dssupport.net for inclusion in the next newsletter. We want to know... If we have your US postal address you were mailed a survey about the future of our group. Please take a moment, fill it out and mail it in the envelope provided. If you didn't receive a survey and would like to participate you can download the PDF here. Thank you for your time! Please return the Survey before Nov. 10 so we can discuss results at the Nov. 15 meeting. Computer Banc (Springfield, Illinois) If your child receives special education services and your household income is limited, your child may receive a computer. Computers are Pentium speed with window operating systems, a word processing program and educational software. To receive a computer you must do the following: 1. Provide proof of special education services (IEP) and your income. 2. You must also attend a computer Banc orientation meeting. The next orientation for families is November 15, 2003. Registration is required by calling 217-528-9506.		Calendars Our group will be selling beautiful GiGi Playhouse Calendars for the 2004 year. These calendars feature children with Down Syndrome. The cost is $12.50 each and our group gets $2.00 for each one we sell. If you are interested please contact Jennifer at info@dssupport.net or call 815-577-7903. I will have them available at our meeting on Nov 15. You can view each month's photo at http://www.gigisplayhouse.com/2004calendar.php. These make great gifts!! Member Events Buddy Walk line up Our great dancers. More photos from the Buddy Walk can be found at www.dssupport.net/buddywalk/dayphotos/dayphotos.html. Has your little one made a great accomplishment? Or do you just want to let everyone know of an event that has happen to you? If so, let us know. Email your event to info@dssupport.net for inclusion in the next newsletter. Shop & Share Our Shop & Share dates are Nov. 17, 18, and 19. Please do your shopping on these days at Jewel and give your Shop & Share slip to the casher. When you do our group will receive 5% of your total. Extra slips can be printed here.
		U.S. officer takes Down Syndrome school under his wing By KEN DILANIAN Knight Ridder Newspapers (Posted on Sun, Sep. 14, 2003) BAGHDAD, Iraq -He calls her "just amazing." She calls him "the first and the best" American. Theirs is one of the many joyous and fruitful partnerships between U.S. soldiers and Iraqis that are often drowned out by news of hatred and death. Sahira Mustafa spent 10 years and uncounted sums of her family's money building Iraq's only school for children with Down Syndrome. It's named after her daughter Hiba, who is afflicted with the genetic condition. Lt. Col. Richard Bowyer runs a heavy artillery battalion in the 1st Armored Division, which means he's in charge of some of the world's most fearsome weapons. But his job these days is to patrol a section of Baghdad - a neighborhood that includes Mustafa's school. When Bowyer learned about the school a few months ago, his heart leapt a little bit. His 7-year-old son, Sam, has Down Syndrome. "It must have been meant to be," Bowyer said, shaking his head and smiling. Bowyer and his aides quickly decided to take a special interest in Mustafa's school. They visit once a week - often bringing donated supplies - and they are seeking funds to help pay teachers. "I understand the issues she has, simply because I've dealt with them myself," he said. Mustafa's husband, Hashim Mezel Monsour, a guided missile expert, was an Iraqi army general until he retired after the Gulf War. They lived in London from 1984 - a year after Hiba was born - until 1989. There, Mustafa devoted herself to learning how to raise and educate a Down Syndrome child. When the family returned to Iraq, Mustafa went to work for a government institute for handicapped children, but she became frustrated with its retrograde approach. "Iraqis feel ashamed of these kids," she said. She founded the school in her family's large home. There were four students and one teacher beside herself. Today, there are a dozen teachers and more than 150 students of all ages. The school has taken over large sections of the house, and the rooms are filled with furniture, learning aides and artwork. Children with Down Syndrome are mentally and physically impaired, but they can learn and function well. At the Hiba Institute, students study math, English and tae kwan do, among other things. Selma Sa'ad's brother, Wathik, enrolled and she liked the place so much she signed on as a teacher. "Before, he had nothing in his life," she said, "He couldn't read, he couldn't talk. Now he's in the second class." Saddam Hussein's regime left them alone, but the education ministry didn't provide funds. For three years, Mustafa didn't charge tuition for the school, and then in 1996 she began asking those families who could afford it for between $1 and $3 per month. That doesn't cover her costs. The war has complicated matters because families have less money than they once did. Some don't have cars and can't afford to pay for a taxi to take their children to school. That's where Bowyer and his men, who are based in Fort Riley, Kansas, come in. They're looking for a school bus. In the mean time, they donate what they can. One day, they found some computers in an underground bunker and brought them over. Another day came a photocopy machine. Then a small television. "Nobody gave us anything until Mr. Rick came along," Mustafa said. "She's so diligent about this," Bowyer said. "She saw a need and she's put all her resources to fulfill it." Bowyer told his relatives at home about the school. They began donating, too. His wife collected clothes through the main post chapel at Ft. Riley and sent them along. His mother did the same at her church in Winchester, Ken. A dentist friend sent some medical supplies to help Mustafa's other daughter, a dentist who treats the children out of an office in their house. And Bowyer's stepfather, who runs a racehorse organization in Tennessee, got the group to purchase a $1,000 gift card at Wal Mart. On Friday, the Bowyer-Mustafa partnership won plaudits at the highest levels. President Bush praised it in a speech to military families at Ft. Stewart, Ga."In the Hiba School," the president correctly noted, "the Iraqi children have put up a picture of Sam Bowyer on the wall, to thank him - to thank his dad, to thank our country."
		Gene therapy may reverse Down syndrome By SHARI ROAN Los Angeles Times Most people know Down syndrome is a genetic disorder that causes irreversible mental retardation. But that description may not be true in the future. Scientists have pounced on the revolutionary idea that Down syndrome -- the most common genetic cause of mental retardation -- can be treated. First, they must understand the biological cause of the condition, down to the specific genes responsible for the varied symptoms. Then, they hope, they'll be able to reverse or eliminate related problems with cognitive function, memory, speech, sleep and even the neurological decline that occurs in older adults with the disorder. Scientists at Stanford University Medical Center already have identified abnormalities in the nerve cell structure of people with Down syndrome, differences that appear to be responsible for much of the brain damage that is the hallmark of the disorder. They're now trying to home in on the genes that cause that particular abnormality. "People thought that once you're born with Down syndrome, that's it; you can't make the brain better. But we know that is not true about brains," says Dr. William Mobley, a pediatric neurologist at Lucile Packard Children's Hospital at Stanford. "Brains are plastic. We may not be able to cure this disease, but we may be able to make people's lives better." Several advances have paved the way for this hypothesis. Scientists understand the brain far better than they did even 15 years ago, because sophisticated imaging devices have allowed them to better examine its structure, and the mapping of the human genome provided detailed information on the 21st chromosome. Down syndrome is caused by a third, or extra, copy of this chromosome. The mapping of chromosome 21 revealed that it is the smallest of the 24 human chromosomes, containing about 225 genes. Now scientists such as Mobley, director of the new center for Down syndrome research at Stanford, are working to identify what those genes do. Experiments on Down syndrome mice have shown abnormalities in the synapses, or circuits, between nerve cells. The abnormal structure and function of the synapses lead to the kind of brain damage seen in Down syndrome and Alzheimer's disease. People with Down syndrome typically develop Alzheimer's disease in adulthood, Mobley says. Now researchers are trying to figure out which of the genes cause this problem in Down syndrome. Fixing the defect may involve turning off the extra copy of certain genes. "We definitely know that genes cause this," Mobley says. "If we find an offending gene, theoretically we can make things better by turning off that third copy." Treating a condition caused by an extra gene, he says, may prove easier than treating other genetic diseases such as cystic fibrosis, in which genes are abnormal or missing. Drugs could be developed to turn off that extra gene and improve cognitive ability in people with Down syndrome. Theoretically, Mobley says, the drugs could be given at any point in the life span to improve brain function. Scientists caution that potential treatments resulting from this research are at least a decade away. But ultimately, Madnick says, "the result is going to be an individual who is much more independent, has a job, has an apartment, is a taxpayer. It's not only going to enhance their lives, it's going to enhance society."
		reprinted from the Idahostatesman.com Against the odds - Couple with Down Sydrome Marries Post Register Jeremy Martinsen and Simone Nelson, who were both born with Down syndrome, were married last month in Idaho Falls. REXBURG — They met at Lava Hot Springs 3 1/2 years ago, swimming in the hot pools. She was there to celebrate her father´s birthday. He was there to mourn the death of the family dog. Brave soul that he was, Jeremy Martinsen swam up to Simone Nelson. They struck up a conversation. They talked about their families, their love of swimming, their love of Jesus Christ. They began a long-distance relationship. Jeremy lives in the small town of Afton, Wyo., renting a basement apartment a few blocks from the Lincoln County School District headquarters, where he works as a janitor. Simone lives in Rexburg with her folks, taking classes at Brigham Young University-Idaho and volunteering at Madison Memorial Hospital. On Valentine´s Day 2003, he proposed. “She had a present for me,” Jeremy said. “I had a present for her.” That present turned out to be a wedding ring, hidden in its velvet box under a corner of Jeremy´s bedspread. As she lifted the blanket, he got on his knees and asked for her hand. Jeremy and Simone both were born with Down syndrome. When she was born 24 years ago, doctors predicted Simone wouldn´t live to see her second year. After Jeremy´s birth 29 years ago, doctors didn´t say much of anything, aside from a prediction he might not survive his first week. Both have survived not only open heart surgery but also the occasional ridicule that comes to those with their condition. The two married last month in Idaho Falls at the Church of Jesus Christ of Latter-day Saints Temple. “He´ll always be there for me,” Simone said as they picked up their marriage license. “We´ll both live together, go out on dates together. I´ve always wanted this.” “I love her, and I´ll always love her,” Jeremy said. When Jeremy was born, his doctors didn´t tell his parents, Dean and Cindy Martinsen, much of anything. “I was young,” Cindy Martinsen said. “Maybe they figured I´d just have more kids after Jeremy was gone.” The little infant struggled, often turning blue as his body fought for oxygen. Consultations with other doctors got Jeremy to Salt Lake City and on the right treatment path. “He was our first child,” she said. “We made up our minds that he would do everything everybody else does.” He did. He and his closest sister, Erin, 27, graduated from Star Valley High School the same year, 1994, two of 175 in the class. “He helped me as much as I helped him,” Erin said. “He takes notes a lot better than I ever did.” Jeremy, the oldest of six children, wanted to serve a mission for the church and persisted with leaders in Salt Lake City and in Wyoming enough that he was sent on a “mini-mission” for three weeks to Omaha, Neb. Throughout his life, he participated in Special Olympics, taking and still holding Wyoming state titles in weightlifting. “He´s made way more compassionate people out of my kids,” his mother said. “All of them, except for the youngest, have been involved with Special Olympics, coaching or being buddies.” For almost a year, Jeremy has lived on his own. He´s written a book, “The Book About Life,” which the family is self-publishing this fall. “It´s a book about what people go through in life, how they have lots of different support,” Jeremy said. “Philosophies have changed in the past 24 years, but when Simone was born, we were told to put her in an institution and walk away,” said Kathleen Nelson, Simone´s mother. Instead, Garth and Kathleen Nelson took Simone the second of four children home and the struggles began. “She didn´t sleep hardly longer than 20 minutes at a time,” she said. “We got so attuned to listening to her that if she did sleep longer than that, we´d wake up and have to go in and shake her to get her breathing again.” Simone was born with three holes in her heart, common developmental defects linked to Down syndrome. She had heart surgery to repair the holes at 10 months of age. “I think what amazes me is that she´s always been a magnet for people,” Kathleen Nelson said. “If we were at a church function or somewhere else, people always came to see her. She was just happy, babbling.” Simone became a sports nut, always begging siblings, cousins and friends into pickup basketball games. She was manager for Madison High School´s volleyball squad and was chosen in her senior year as Senior Prom queen. She graduated in 1994. At Ricks College, where she took classes in fitness, swimming and religion, she met Joann Reeve, head coach of the women´s volleyball squad. She paired up with the team´s manager and performed duties such as sweeping floors and occasionally participating in practices. Simone also tended babies at the in-school nursery at Central High School, the Madison School District´s alternative school, and volunteered at Madison Memorial Hospital. The Nelsons credit the community with Simone´s success. “They say it takes a village to raise a child,” Kathleen Nelson said. “Well, here is a child raised by an entire community. She got so much help from students at school, teachers, others she worked with.” And they still are offering, Garth Nelson said. Contributions to a wedding registry bank account have soared. “We´ll look at checks and say, ´Wow, who is that?´ ” he said. “She´s affected way more people than we´ve been able to send announcements to.” According to the New York-based National Down Syndrome Society, it´s a myth that those with the disorder are unable to form close relationships that lead to marriage. The story of Jeremy and Simone attests to that. “This has been a dream of Jeremy´s forever,” said Cindy Martinsen. “It´s not like we weren´t prepared for it; it was just something he always hoped would happen. And here it is. It´s meant to be.” “We´re both spiritual people,” Jeremy said. “We love each other. We´ll be together forever.” Her father and his mother teased her at the county building when they got their wedding license. “Hey,” he said. “That´s the last time you´ll sign your name as Simone Nelson. It´s Simone Martinsen, with an ´e,´ from now on.” No matter the name, Jeremy and Simone believe they´ll make it. “We´re going to live together in Wyoming,” Simone said. “We´ll cook for each other. We´ll clean. We´ll be happy.” Jeremy will continue his cleaning jobs. The Nelsons are trying to find Simone a volunteer job with the local school district because she´s on Wyoming´s waiting list for work for the developmentally disabled. His parents live a scant 6 miles away. “He´s got a lady they rent from who watches out for him,” Cindy Martinsen said. The Nelsons will visit as often as time permits. “It feels odd, having her leave after such a long time with us,” Garth Nelson said. “But it´s what she wants. We wouldn´t have it any other way.” “I remember something Jeremy said, pretty much to himself, as he was riding in my car one day,” Garth Nelson said. “He kind of sighed, raised his hands, and said, ´This is what I´ve wanted all my life.´ I remember asking, ´What is that, Jeremy?´ He replied, ´Someone to love me for who I am, and a family to grow into.´ He is completely, perfectly content, and so is Simone.” Edition Date: 09-08-2003