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  • Title: Chromosome 9p- Network > Home
    Descriptive info: .. Home.. About Us.. Links.. Photos.. News.. Manning Monitor 2000.. Standard Times 1998.. Las Vegas Review Journal 1997.. Support.. Guestbook.. You are here.. Login.. Welcome.. Monosomy 9P, otherwise known as Alfi's Syndrome or 9P-, is a rare chromosome anomaly.. Due to its rarity, parents of children diagnosed with 9P- are usually left in the dark because so little is known.. Parents are left feeling isolated, fearful and alone.. This is where the support group comes in! In 1984, a handful of families began exchanging information about their own child and his/her achievements.. We have now expanded to include families worldwide and  ...   doctors, therapists and teachers.. We now have a geneticist conducting research to update the clinical information to avoid giving new families the same dire diagnosis some of us were given.. We are a non-profit organization.. We strive to educate, foster hope, and develop a greater understanding amongst our members and the community.. We are dedicated to enriching the lives of our children and their families.. For More Information.. Chromosome 9P- Network.. P.. O.. Box 524.. Appleton, WI 54912.. 9pminusinfo@gmail.. com.. Donate.. All gifts to the Chromosome 9p- Network are tax deductible.. Copyright 2008 by Chromosome 9p- Network.. Terms Of Use.. Privacy Statement..

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  • Title: Chromosome 9p- Network > Home
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  • Title: Chromosome 9p- About Us
    Descriptive info: We are a non profit organization whose mission is to provide information and support to families with children who have 9p- Syndrome.. Our Board of Directors:.. Kris Constantino, President.. Amy Yarcich, Vice-President.. Andrew Earles, Secretary.. Christine Wanek, Treasurer.. Carrie Givens.. Danielle Kean.. Cherie Anderson.. Dana Glore.. History of Chromosome 9p- Network.. Year.. Description.. 1968-.. Dr.. Omar Alfi conducted the original research to study Monosomy 9P.. 1972.. His research was based on 6 children, 4 of whom were institutionalized.. 1984.. Jon Storr, Ohio, began searching for other 9P- families through letters to genetic hospitals.. Once families were located, they started writing letters to share information about their children and the syndrome.. 1987.. Beverly and Jim Udell, Nevada, took over the organization of letters and made it an annual event.. 1988.. A bank account was opened in Nevada to accommodate costs for the group, under the name “Support Group for Monosomy 9P”.. The first pictures were shared in the annual 9P- Update Package.. For many families, this was the first time they were able to see what another child with 9P- looked like.. 1992.. Carol Crowe,Ohio, a Geneticist conducting research on 9P-, joins the group.. We were now up to 42 families!.. 1994.. Stuart Schwartz joins the Research Team.. 1995.. We became an international organization with the addition of families from Canada and Puerto Rico.. We now have 70 families in our group!.. 1996.. The “Support Group for  ...   from the US and Canada in attendance.. We now have families from all over Europe.. The roster goes over the 130 mark.. 2000.. The Regional was held in Omaha, Nebraska with 36 families coming from 5 different countries.. An e-group was started for parents to share information and get immediate answers to their questions.. We have165 families in our group.. 2001.. Our Regional was hosted in Birmingham, Alabama this year.. About ½ of the families attending had never before seen another child like their own.. Research continues with Dr.. Crowe & Dr.. Schwartz.. We now service 190 families.. 2002.. This year we had 44 families from all over the world attend the Regional in York, Pennsylvania.. 2003.. The Regional was held in Palm Springs, California.. 36 children with 9p- and their families from all over the U.. S.. , Canada and England were in attendance.. The roster now has 197 children/adults.. 2004.. Beverly Udell relinquishes her role as the Network President and turned these duties over to the current Board of Directors.. Several Committees are formed.. Crowe retires as head of the research team.. Schwartz continues the research project.. Yearly stories are now in booklet form and on a CD.. 2005.. St.. George, Utah was the location for the Regional.. 43 9p- children attended, including families from England and Denmark.. The roster now has 216 members.. 2008.. Our Regional this year will be held in Hyannis, Massachusetts..

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  • Title: Chromosome 9p- Links
    Descriptive info: Name.. The Genetic Alliance.. A not-for-profit organization dedicated to helping individuals and families who have genetic disorders.. Family Village.. A global community of disability-related resources.. National Organization for Rare Disorders (NORD).. A unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities.. MUMS.. A national parent to parent network.. Special  ...   A unique non-profit organization dedicated to providing disabled children with a tiny Shetland Pony to love and care for --completely without charge.. iGive.. To enable the economic power of individuals to benefit their chosen communities.. Chromosome Deletion Outreach.. Education, Advocacy, Information Support.. For all those affected by a rare chromosome disorder.. Unique.. Rare chromosome disorder support group..

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  • Title: Chromosome 9p- Photos
    Descriptive info: Photo Gallery.. Install latest flash player if you can't see this gallery.. Ultra Media Gallery 5..

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  • Title: Chromosome 9p- News
    Descriptive info: News Articles..

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  • Title: Chromosome 9p- News: Manning Monitor 2000
    Descriptive info: THE MANNING MONITOR.. Manning, Iowa.. Thursday, July 20, 2000.. Vol.. 118 No.. 33.. Front Page.. EXTREMELY RARE GENETIC DISORDER BROUGHT FAMILIES FROM ALL OVER THE WORLD TOGETHER FOR A WEEKEND AT MAHONEY STATE PARK.. By: Jeannea Sybesma.. The stories that came out of that weekend are full of both emotion and inspiration.. There was 15 year old Meghan Murphy who was trying to sell raffle tickets to support the Chromosome 9p- Network, and when asked what the money would be used for she responded, "To help my friends, of course.. ” Meghan’s uncle was so moved by that simple statement that he footed the bill for the airline tickets that brought Meghan and her mother, who live in Massachusetts, to this most incredible event.. Then there was the Davies family, with 1 year old Daniel, whose whole neighboring community held fundraisers for over a year to pay for their family to travel all the way from England for this moment that would change their lives.. The same story is true of the family of Mitchell Eyre, whose trip was funded by their town along with help from the Lions Club, because ticket costs from Australia for the family of four are astronomical.. Their fundraising took them over 2 years to accomplish this goal of sending them half way around the world.. What is the common thread that pulls them like magnets, attracting the Murphys & Davies as well as other kids and their parents, to travel from all over the globe just to spend one weekend together? The answer - a particle of material that is so small it takes specialized microscopes under lab conditions to determine it’s been deleted, but so large in it’s affect that it produces some of the most rare but yet incredible kids.. These kids have characteristics that are life altering to them and their families.. The genetic condition that all of the kids that gathered together that weekend have, is called Alfi’s Syndrome, or more commonly just called ‘9p-‘.. The 4th annual gathering was coordinated through The Chromosome 9P- Network.. They call these events “Regionals”, because it is the heart of the 9p- group to get to as many different ‘Regions’ as possible to get as close to as many of the 9p- families as they can.. The non-profit organization was started back in 1984 with a handful of families exchanging information, and over the years the number of families grew to reach its current number of 170 families worldwide.. 9p- is an extremely rare anomaly, in which a very small piece off the top of one of the 9th chromosomes is missing.. It has been estimated that only one out of every 4.. 5 million births is affected by the rarity.. Parents of children diagnosed with 9P- are usually left in the dark because the medical profession knows so little.. Parents are left feeling isolated, fearful and very alone.. The children are born with a wide variety of physical and mental delays, and many have numerous surgeries for corrections of their cranial facial areas, heart, kidneys, palate, ears, etc.. , as well as years of therapies for physical and speech related issues.. The weekend was full of the sharing of information, stories, trials and tribulations, as well as laughter and tears according to Beverly Udell.. Beverly, president of the 9p- Network, and her husband Jim Udell of Las Vegas, Nevada were also present at Mahoney State Park over the weekend.. They not only had a very important role to carry out over the weekend by sharing information about the rare disorder, they were also there to gain support of other parents of 9p- children.. Their 13-year old daughter Chelsea is also a 9p- child.. The event, located this year at Mahoney Park in Ashland NE, was held June 16-18 and was funded entirely by the generosity of various companies, groups, and individual donors from Nebraska and Iowa.. Hosting the entire event was former Manning residents Mark and Becky Siepker with the help of their family.. They worked over a year to make the successful event a reality.. Mark and Becky, who currently live in Omaha, had each attended one of the previous years Regionals with their son Jeff who is 17 years old and has 9p-.. Mark traveled to Massachusetts in 1998 with the 9p- group, and Becky and her father brought Jeff to the Texas Regional in 1999.. "They were teased that they had to host one of these 9p- family gatherings in order to finally be able to attend one together", said Beverly.. Mark and Becky gathered a whole committee of volunteers, which included many people from Omaha.. Jeff who will  ...   to make these kids so happy.. In addition, she said her son and daughter-in-laws responsibility to make the weekend the ultimate experience for the 9p- children and their families were remarkable.. Marlene said there had been much preparation over the last year getting ready for the event and Mark even went so far as testing numerous kites and calling the National Weather Service and High Plains Climate Center to find out their chances of getting just the right amount of wind for their kite and bubbles day.. (Five to eighteen miles per hour for your knowledge.. ) Becky even spent the night at the park, one-year ago to the exact date of the planned weekend, to ensure their dates to reserve the park.. Marlene remarked on the last day when everyone was ready to return home, “It was really hard for most of the children to say goodbye.. It was a tear-jerking day for all of us.. Renee Halbur, along with her daughter Nicole from Manilla were also volunteers for the extraordinary weekend.. Marlene mentioned that Nicole was planning to come home earlier than Sunday but after spending time with the children decided to stay the entire time.. “It was a great experience for Nicole, she really took to the kids,” her grandmother said.. The Manning area was also represented by one hundred-fifty handmade cookies in the shape of an ‘N’ for none other…Nebraska, made especially for the weekend by Ann Wegner and Connie Siepker.. Thirty-five families from 19 U.. states and from Australia, Canada, England and Scotland came to the gathering.. This was the largest number of families ever to attend a 9P- gathering.. For most of the families attending, this will be the first time they have seen another child with 9P-.. The gathering provides a way for the 9P- families to finally meet one another, share information and develop friendships to help them cope with the many challenges that lie ahead.. Beverly said that while the parents compare notes to learn more about the disorder, the kids with 9p- and their siblings were all actively engaged in crafts, kite flying, food and fun.. Beverly shares “A good percentage of the kids who have 9p- could pass for brothers and sisters.. They not only share a ‘look’ that is common to someone with Alfi’s Syndrome, (i.. e.. small nose, small low set ears, beautiful almond shaped eyes, small chin, delicate hands with long fingers, and long thin flat feet, just to name a common targets) but somehow they also seem to instinctually know they are the same.. They are drawn to each other like magnets, and then stay best buddies.. Thoughts contributed by Bob Schultz were, “One of our four sons, Daniel, has 9p- and we ‘were in the dark’ about the specific nature of his problem for 28 years.. The 9p- parents and children were indeed like family.. And, we just don't have words to express our thanks to the Siepkers and the volunteers for the great job they did.. Also in attendance at the Regional was Dr.. Carol Crowe, a geneticist from Cleveland, Ohio.. She is the Chief of the Division of Medical Genetics at the MetroHealth Medical Center in Cleveland.. Crowe has been conducting research on 9P- since 1992.. She attends all of the gatherings so that she can finally meet the 9P- children face to face; and help in her research which otherwise would have to be conducted solely by telephone and through the mail.. Beverly said the entire weekend was a huge achievement for the children and families dealing with 9p-.. “Our goal is to get the word out about 9p-.. There are so few people who know about the syndrome, and if we get the word out and educate people about the condition we will be helping the entire cause.. ” She also commented that through a short Omaha editorial that ran a few days after the weekend long event, they were put in touch with another 9p- family that lived right there in Omaha.. “The chances of having two children living in the same town with 9p- is astronomical.. We are lucky if we have two in the same state.. ” She also said that the Siepkers have been in touch with and are planning to meet with the newest members of the Chromosome 9p- Network.. This story was written in conjunction with Beverly Udell, president of the Chromosome 9p- Network.. To find out more about the Chromosome 9p- Network, you may visit them on their web site at.. www.. 9pminus.. org.. or write to: Chromosome 9p- Network, C/O Beverly Udell, 393 N.. Grass Valley Rd.. , Pine Valley, UT, 84781..

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  • Title: Chromsome 9p- News: Standard Times 1998
    Descriptive info: STANDARD TIMES.. June 21, 1998.. FAMILIES LEARN THEY AREN'T ALONE.. Rare genetic disorder is the bond.. By Bridget McSweeney, Standard-Times staff writer.. DARTMOUTH -- A small picture of 2-year-old Stacey, now 15, sits on her mother's desk as a reminder.. A reminder of how cute she was, because I missed it.. I was so busy worrying about her, I missed it, said Dianne Simmons.. Mrs.. Simmons described the kind of worry most parents can't imagine.. Heart and skull operations.. Being told your child might never walk, or talk, or that she might die with no one being able to explain why.. Stacey is one of less than 120 children in the country diagnosed with a rare genetic disorder called 9P minus, or monosomy 9P, where part of the ninth chromosome is missing.. The effects of the disorder can range from mild to severe mental and physical retardation.. For the Simmons family, and the families of the 27 children gathered in Barbara Young's backyard yesterday, the words they heard following the diagnosis of their children with 9P minus were the same: Your child is the only one.. The group -- consisting of people from around the country and Canada -- gathered in Ms.. Young's backyard, however, proved children who have this rare genetic disorder are certainly not alone.. But for many families, yesterday was the first time they ever met another family with a child who had the disorder.. Ms.. Young was inspired to put together the barbecue-style event -- complete with fire engine rides and a clown -- after having attended a similar gathering with her 16-year-old daughter, Heather, who has the disorder, in California last year.. There is no medical history about these children, nothing in a medical book, Ms.. Young said.. We had not, until November 1997, ever met another family, Ms.. She was so emotionally moved by the experience, she volunteered her house and planned yesterday's event in six months.. Many of the families at Ms.. Young's house knew each other's children through packets including letters and pictures put together by Beverly Udell of Las Vagas, Nev.. , the co-leader of A Support Group for Monosomy 9P.. The network was started by John Storr of Ohio, who had a daughter born with the disorder in 1982.. When he discovered the lack of information about the disorder, he wrote letters to all the genetic hospitals in the country asking them to give  ...   of letters and photographs, Mrs.. Udell said, to give all parents all possible information about the disorder.. While the network of parents isn't a support group in terms of meeting every week -- a logistical impossibility -- the information they are able to share with each other about the disorder has made all the difference for them.. The moment Mrs.. Udell was reading her first packet of letters, Chelsea was in the hospital with unexplained high fevers.. The very letter Mrs.. Udell was reading from another parent said if your child is suffering from unexplained fevers, have the doctors check for kidney reflux.. Udell made the suggestion to the doctors and Chelsea did indeed have kidney reflux and since had an operation to remedy it.. The importance of events like the backyard barbecues and the sharing of information is to get the word out about the disorder, Mrs.. The Youngs also held a fund-raiser Thursday not to try and raise funds to be able to keep putting out the mailings, and to buy the equipment necessary to put them out.. I'm almost an 11-year veteran at this, and I want you to look me in the eye when I say this, Mrs.. If you were to ask if I could take Chelsea and make her normal, the answer is no, Mrs.. Udell said, her eyes filling with tears.. Because then, she would not be Chelsea, she said.. Last year, the Udells passed through Texas on a trip, they made plans to meet with the Simmons family.. It was the first time since Stacey was born that either Mrs.. Simmons or Stacey met another family who had a child with the disorder.. When I saw Chelsea, I just cried and cried, Mrs.. Simmons said.. I promised myself I wouldn't do that today.. Simmons said she and Stacey have a special bond.. If I ever won the lottery, I'd quit work and visit every family around the country that has a new baby with this and take Stacey, and say, look, everything will be fine, Mrs.. Photo by Dana Smith.. Tara Mansell, left, who suffers from a rare genetic disorder and her sister Lori examine crustaceans they pulled from a touch tank at yesterday's gathering for families of children with the disorder.. The event brought more than 20 families from around the world to the Dartmouth home of Barbara Young.. Copyright 1998 The Standard-Times.. All rights reserved..

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  • Title: Chromsome 9p- News: Las Vegas Review Journal 1997
    Descriptive info: LAS VEGAS REVIEW JOURNAL.. Sunday, December 07, 1997.. THE NINTH CHROMOSOME.. Chelsea Udell was born with a genetic disorder so rare that doctors told her parents there was no information on the malady.. Alfi's syndrome is caused by the absence of part of the ninth chromosome, and it leaves its victims with physical and mental disabilities.. By: Lisa Kim Bach.. Review-Journal.. Chelsea Udell was born with huge blue eyes, fat cheeks and a ready smile.. She also came with six fingers on each hand, a bony ridge on her forehead and an assortment of medical ills that required $250,000 in surgery and treatment before she celebrated her fourth birthday.. A chromosome test performed by her doctors the first week of Chelsea's life showed she had Alfi's syndrome, the common name for monosomy 9p-minus.. The genetic disorder caused by the absence of part of the ninth chromosome pair is so rare that Jim and Beverly Udell were given little information and almost no hope for Chelsea's future when she was born in 1987.. Institutionalizing their newborn daughter was an option the couple couldn't accept.. Their search for something to sustain them eventually led to a support group of fewer than 20 families with children like Chelsea.. "It's every parent's worst nightmare to have a child who's not healthy," said Beverly Udell, now the group's vice president.. "We were told that Chelsea wouldn't learn to walk,talk or even recognize her parents.. Thank God they were wrong.. " Chelsea is 10 years old, and the Udells have become a source for the information they had so desperately wanted as frightened parents of an Alfi's syndrome newborn.. Like other parents in the group, the Udells write yearly updates, letters that are collected and shared when new families join the circle.. Udell distributes the histories of the 9p-minus children, which blend family life with detailed medical experiences and different approaches to therapy.. Her packets go to 9p-minus parents around the world, a growing roster that includes families in Jerusalem, Ireland, Australia and the United States.. Membership has more than tripled since the Udells first joined.. The group isn't widely known, but parents are able to find out about it through the Internet or by word of mouth.. "I just talked to one mother on the phone whose daughter is 3 months old," Udell said.. "She cried because I was the first person in three months to say congratulations.. Most people don't know what to say.. I always tell parents not to look at this as a curse.. They've been given a child to love.. " Learning what to expect "We were told that what Chelsea has was extremely rare (only 20-40 cases in the world), and not to even bother looking for information because there wouldn't be any.. So we just took our daughter home with not a whole lot of encouragement.. At one point it was even suggested to us that because of her severe mental capabilities, if she were to go into cardiac arrest, we might just opt to let her die.. " --Excerpt from a Udell letter to support group parents.. Chelsea stopped moving in her mother's womb when Udell was five months' pregnant.. The Udells thought their second child had been affected by her mother's bout of chicken pox, but they later discovered that poor muscle tone is common among Alfi's syndrome babies -- Chelsea was moving, but so slightly Udell didn't feel it.. Genetic testing showed neither of the Udells carried the disease.. Doctors could give no explanation for their daughter's affliction.. "When Chelsea was born, I had no idea what a chromosome was," said Udell, who gave birth at the former Womens Hospital.. "The doctors had to explain it to me.. They just told us this was something that happened spontaneously on conception.. " Although the disease can be inherited, she said the majority of cases appear to happen randomly.. The Udells' oldest child, Lindsey, who's 17, has no health problems.. Neither does Chelsea's younger sister, 9-year-old Jamie.. That's why the arrival of a child with Alfi's syndrome is such a shock, Beverly Udell said.. Most parents never see it coming.. "We can really feel other people's pain," she said.. "The predictions are all so dire.. That's one of the reasons I have Chelsea and Jamie leave the message on the answering machine.. It gives the parents who call hope that yes, their child can learn to talk.. " But the Udells don't soft-peddle the kind of obstacles a 9p-minus child will face.. Chelsea has features common to those with the disorder -- low-set ears, elongated fingers, developmental impairments, and intellectual delays.. Her life began with respiratory problems that put her in a newborn intensive care unit before her mother even had a chance to hold her.. Chelsea also had two holes in her heart.. Surgeons had to remove her extra fingers, which had become infected.. The bones of her forehead had prematurely fused together, a condition that would have caused severe brain damage if not corrected before Chelsea developed.. Because of poor muscle tone, Chelsea was too weak to lift her own arms.. She also was born with the beginnings of a cleft lip and palate, a condition that would later impede speech development and cause problems with eating.. Food that was swallowed often would  ...   spray and antibiotics, but the infection drained into her lungs, initiating a month long bout with pneumonia and bronchitis.. Another surgery to repair her cleft palate and improve her speech had to be reversed in 1995 because it was causing sleep apnea.. In their annual missive to other parents, the Udells jokingly labeled 1996 the year of "Un-Chelsea" because nothing dramatic, traumatic or life-threatening happened.. "It's a really hard thing to do, to sit down and write these letters about your child," her mother said.. "But when things go right, you're grateful.. " A turning point in the way her parents perceived Chelsea came in 1994, when a school psychologist told the Udells he thought their daughter was learning more than was apparent.. The psychologist took the time to create special tests designed around Chelsea's short attention span and her tendency to be nonverbal.. They showed surprising results.. Contrary to the beliefs of her teacher and her mother, Chelsea did know the alphabet and could point out specific letters.. During previous testing, she'd been asked to name them verbally, and didn't, perhaps because of her speech problems.. The psychologist also tested her in short spurts instead of long intervals.. He found her IQ to be in the low average range of 70 to 80, instead of the mentally retarded range of 30, a score Chelsea had earned in previous testing.. "I hate those words -- mentally retarded," said Udell, who has shared the testing methods with the support group.. "Can anyone really say what a 30 IQ is?".. Giving others hope.. "Everyone of you parents already know what Chelsea is like to have around.. You all see her every morning when you look into the face of your own child who has 9p-minus.. My theory is that when the Lord saw that part of the ninth chromosome was missing, he replaced that missing part with a ray of sunshine that's now housed in every cell that makes up Chelsea.. "Did you see my award?" Chelsea asked after Rundle Elementary School's ceremony honoring its November good citizens.. The other students had taken their certificates and returned to their seats.. But after Chelsea was given her award and her handshake, she made a beeline for her mother's seat in the audience.. "This from the child who wasn't supposed to know me," said Udell after giving her daughter a hug.. Chelsea is mainstreamed in a fourth-grade class.. Udell said this year has been a struggle for the girl -- for some reason, she's lost weight and forgotten some of the things she used to know.. The family also found out recently that Chelsea's breast bone, which is concave, is pushing her heart into her spine as she grows.. It's not the cause of her current health problems, but the Udells worry about it anyway.. "The parents who call ask me how awful it's going to be," Udell said.. "They want me to tell them what will happen.. That's why the letters are so important.. " Udell can't predict the future for those worried parents, but she can and does send them every letter written by every family in the group.. It's a broader source of information on monosomy 9p-minus than any doctor could give them, Udell said.. The cost of mailing the packets grows as more information is added -- it recently cost Udell $60 to send the information to Australia.. And the budget for sending out the yearly updates to the support group's regular family members is nearing $1,200.. "Every year, I sweat about how we're going to pay for it," she said.. "But every year, we get it done.. We just have to have faith in God that he'll provide.. " Even though the Udells are looking to sell their house to move into a smaller one, skipping the mailings isn't an option.. One year, Udell financed the mailings with a small inheritance from a family member.. Another year, money came from an Irish family whose child died of 9p-minus complications.. Another family asked that money be sent to the support group in lieu of flowers.. The group is now incorporated in Nevada as a not-for-profit organization, and Udell hopes to begin actively seeking donations soon.. "Someone who knew someone printed stationary for us at a discount," Udell said.. "Someone else donated a copy machine.. We're hoping to get a computer soon.. I'd like to have someone start a Web site for the group.. " In the meantime, the group is planning another meeting, this time on the East Coast.. The first one was such a success, Udell said, all the parents are clamoring to do it again.. "I can't tell you what it means to see another child," said Udell, explaining that because the disease is rare, 9p-minus families usually never meet.. "It gives hope.. I believe that's why Chelsea's here -- to give hope.. ".. When Chelsea was born, doctors were doubtful she would walk or talk because of her genetic disorder.. Today, she and her younger sister, Jamie, are playmates.. Photos by John Gurzinsky.. Beverly Udell watches Chelsea while she plays with the family's rabbits.. Chelsea's main passions are ger animals and computer spelling games.. Ten-year-old Chelsea Udell leaves school with her citizenship award in hand.. Used with the permission of the Las Vegas Review Journal..

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  • Title: Support Chromosome 9p- Network
    Descriptive info: Thank you for helping us with our mission.. We are a non-profit organization with little overhead.. Since all of our directors and staff work on a volunteer basis, 100% of your donation goes to educating families and supplying them with correct information as well as a place to turn for support, ideas, and a brighter outlook on life.. There is never a charge for services or information.. We do, however, incur costs relative to the printing and shipping of materials,  ...   these ever increasing costs, we are so very thankful for your donations.. Your tax deductible donation can be sent by mail to our group address, or through Paypal (a private and secure website for paying by credit card).. Thank you for your help in supporting our promise to provide free information to those in need.. In doing so, your outpouring of love will encourage - and many times save - the lives of precious children while giving hope to their families..

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  • Title: Guestbook
    Descriptive info: Name:.. Amy.. Date: 1/28/2011.. My Aunt with 9p- just celebrated her 53 rd birthday.. She goes to PARC everyday, where she has worked for the past 3+ decades.. She is truly an inspiration to me.. I would love to see her be apart of a fun camp or get together.. Any info on that would be apreciated!.. Location: Kaysville.. United States.. Lindsay.. Date: 12/18/2010.. My son is now 15 months old, he was diagnosed at birth.. Thank you for your information and support to the families and friends who have children in their lives with chromosome 9p deletion.. Location: Vista.. Dawn.. Date: 11/29/2010.. I'm so happy to have found this site.. My niece was just diagnosed and everyone has lots of questions! Thanks for being here for us to come to.. Location: Sarasota.. wendy fallon.. Date: 9/7/2010.. Hi Everyone Not visited for ages hope everyone is well.. David is doing OK in Supported Living still have a long way to go but slowly slowly catch a monkey so the saying goes.. Did not get round to contributing to year book for this I apologise promise next year Take Care everyone love to you all and your SPECIAL children.. Location: Exeter.. United Kingdom.. Margaret Banks.. Date: 7/30/2010.. hi this is Aidan Banks mum here.. looking for info on seizures.. over the last few weeks we have had two episodes when he has been almost vacant and unresponsive for several minuites hands stiff and mouth almost distorted, we are being referred to neurologist but looking for info from anybody.. aidan is almost 15 yrs.. apart from this he is doin great.. maggie.. x.. Location: Scotland.. Emily.. Date: 4/2/2010.. I would love information on 9p.. My son is 2 and got diagnosed with it at birth.. We really don't have too much info on it and would love to talk to others out there going through the same thing.. Location: Wausau.. brenda switzer.. Date: 3/29/2010.. my daughter Melissa Rowe is now 18 dianosed at birth  ...   Algeria.. American Samoa.. Andorra.. Angola.. Anguilla.. Antarctica.. Antigua and Barbuda.. Argentina.. Armenia.. Aruba.. Australia.. Austria.. Azerbaijan.. Bahamas.. Bahrain.. Bangladesh.. Barbados.. Belarus.. Belgium.. Belize.. Benin.. Bermuda.. Bhutan.. Bolivia.. Bosnia and Herzegovina.. Botswana.. Bouvet Island.. Brazil.. British Indian Ocean Territory.. British Virgin Islands.. Brunei Darussalam.. Bulgaria.. Burkina Faso.. Burundi.. Cambodia.. Cameroon.. Canada.. Cape Verde.. Cayman Islands.. Central African Republic.. Chad.. Chile.. China.. Christmas Island.. Cocos.. Colombia.. Comoros.. Congo.. Cook Islands.. Costa Rica.. Croatia.. Cuba.. Cyprus.. Czech Republic.. Denmark.. Djibouti.. Dominica.. Dominican Republic.. East Timor.. Ecuador.. Egypt.. El Salvador.. Equatorial Guinea.. Eritrea.. Estonia.. Ethiopia.. Falkland Islands.. Faroe Islands.. Fiji.. Finland.. France.. French Guiana.. French Polynesia.. French Southern Territories.. Gabon.. Gambia.. Georgia.. Germany.. Ghana.. Gibraltar.. Greece.. Greenland.. Grenada.. Guadeloupe.. Guam.. Guatemala.. Guinea.. Guinea-Bissau.. Guyana.. Haiti.. Heard and McDonald Islands.. Honduras.. Hong Kong.. Hungary.. Iceland.. India.. Indonesia.. Iran.. Iraq.. Ireland.. Israel.. Italy.. Ivory Coast.. Jamaica.. Japan.. Jordan.. Kazakhstan.. Kenya.. Kiribati.. Kuwait.. Kyrgyzstan.. Laos.. Latvia.. Lebanon.. Lesotho.. Liberia.. Libya.. Liechtenstein.. Lithuania.. Luxembourg.. Macau.. Macedonia.. Madagascar.. Malawi.. Malaysia.. Maldives.. Mali.. Malta.. Marshall Islands.. Martinique.. Mauritania.. Mauritius.. Mayotte.. Mexico.. Micronesia.. Moldova.. Monaco.. Mongolia.. Montserrat.. Morocco.. Mozambique.. Myanmar.. Namibia.. Nauru.. Nepal.. Netherlands.. Netherlands Antilles.. New Caledonia.. New Zealand.. Nicaragua.. Niger.. Nigeria.. Niue.. Norfolk Island.. North Korea.. Northern Mariana Islands.. Norway.. Oman.. Pakistan.. Palau.. Panama.. Papua New Guinea.. Paraguay.. Peru.. Philippines.. Pitcairn.. Poland.. Portugal.. Puerto Rico.. Qatar.. Reunion.. Romania.. Russian Federation.. Rwanda.. S.. Georgia and S.. Sandwich Islands.. Saint Kitts and Nevis.. Saint Lucia.. Saint Vincent and The Grenadines.. Samoa.. San Marino.. Sao Tome and Principe.. Saudi Arabia.. Senegal.. Seychelles.. Sierra Leone.. Singapore.. Slovakia.. Slovenia.. Solomon Islands.. Somalia.. South Africa.. South Korea.. Soviet Union.. Spain.. Sri Lanka.. Helena.. Pierre and Miquelon.. Sudan.. Suriname.. Svalbard and Jan Mayen Islands.. Swaziland.. Sweden.. Switzerland.. Syria.. Taiwan.. Tajikistan.. Tanzania.. Thailand.. Togo.. Tokelau.. Tonga.. Trinidad and Tobago.. Tunisia.. Turkey.. Turkmenistan.. Turks and Caicos Islands.. Tuvalu.. Uganda.. Ukraine.. United Arab Emirates.. Uruguay.. US Minor Outlying Islands.. US Virgin Islands.. Uzbekistan.. Vanuatu.. Venezuela.. Viet Nam.. Wallis and Futuna Islands.. Western Sahara.. Yemen.. Yugoslavia.. Zaire.. Zambia.. Zimbabwe.. Message.. *.. Enter code!..

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