|August 1997 Issue||
STARnet Region IV Workshops
September 19. Let's Talk about Curriculum for Infants and Toddlers! Regional Office of Education. Presenters: Lisa Fisher and Pat Kluzik Stauch. For additional information call (618) 397-8930, extension 166.
Buddy Walk 97. Sunday, October 19th, 1:00 p.m. Queeny Park.
Join the families, friends, and sponsors of the Down syndrome Association of St. Louis for the 2nd Annual Buddy Walk to raise awareness and promote advocacy for all people with Down syndrome. Last year more than 8,000 people from around the country participated in 37 walks. Food and refreshments will be provided following the walk.
Mail in registration. Individual: $5.00. Family: $15.00. Make check payable to: DSA St. Louis
DSA - Buddy WalkNews Clippings
14974 Lake Manor Court
Chesterfield, MO 63017
Who does DSCC help?
Any Illinois child from birth to age 18 may qualify for no-cost diagnostic services if it is suspected that an eligible medical condition exists. DSCC also can provide financial assistance if the child has an eligible medical condition which can be improved through medical treatment and the family needs help to afford the treatment. To find out if you child is medically or financially eligible, call:
East St. Louis Regional OfficeFor general information call toll free: 1 (800) 322-3722.
State Regional Office Building
#10 Collinsville Avenue, Room 102
East St. Louis, IL 62201-3005
TDD: (618) 875-3902
Now does DSCC help eligible children?
DSCC offers services that include reduced cost or no-cost diagnosis and treatment in an office, clinic, hospital, or other special treatment area. When physician specialists recommend them, DSCC provides braces, hearing aids, and other special equipment and services. DSCC staff works with the child's family, physician specialists, and other service providers to develop the most appropriate program for the child.
How do I apply for help for my child?
Call your nearest DSCC office and request application forms. The application forms will ask you to provide financial and health care information about your child and family. Both the financial information forms and the medical reports must be completed and reviewed by a DSCC consultant before DSCC can tell you whether or not you qualify.
The Children's Swim Program at Lewis and Clark Community College provides safety training for young people between the ages of six months and 16 years. Classes meet on a variety of time schedules in order to accommodate today's busy families. Children advance to higher levels of training as they demonstrate competence in basis skills. Small classes allow opportunities for individualized learning. All classes are held in the Olympic-sized pool located in Hatheway Cultural Center, on the main campus.
For more information, call 467-2332. To register, call 1 (800) 500-LCCC or 467-2222.
Down Syndrome Newsletters Articles
Editor's note: this story first emerged early in the 1990's in the Seattle area. The Washington Special Olympics, based on research with staff and volunteers dating back to more than fifteen years, has been unable to identify the author, anyone who actually witnessed the event or captured it on tape.
What's Really Important
A few years ago at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100 yard dash. At the gun they all started out, not exactly in a dash, but with the relish to run the race to the finish and win. All, that is, except a boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and paused. Then they all turned around and went back. Every one of them. One girl with Down syndrome bent down and kissed him and said, "This will make it better". Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for ten minutes.
NDSS/NICHD Sign $3 Million Research Agreement
Bethesda, MD. The National Down Syndrome Society (NDSS) and the National Institute of Child Health and Human Development (NICHD) have entered a new $3 million partnership that will result in the largest sum of funding ever earmarked for Down syndrome research.
The partnership between NDSS, a private, non-profit organization dedicated to education research and advocacy for individuals with Down syndrome and their families, and the NICHD of the federal National Institutes of Health, is designed as a matching program, whereby NDSS will add $600,000 over three years to an anticipated $2.4 million in funding from NICHD.
The funding will be allocated in the form of grants to individual researchers and organizations conducting research in areas to include Down syndrome-specific cognition, behavior and related therapies. The NICHD expects to publish its solicitation for grant applications in early 1998, with late 1998 as a target date for the first grant awards.
"Down syndrome has always been an area of high priority for the NICHD because it is the most common genetic cause of mental retardation, and because it involves every system of the body," remarked Felix de la Cruz, M.D., M.P.H., chief of the Mental Retardation and Developmental Disabilities Branch of the NICHD. "If we understand the causes and effects of Down syndrome, we can also gain a better understanding of cardiovascular conditions, Alzheimer's disease, childhood leukemia, and more."
The NDSS and the NICHD have a long history of working together, explained Elizabeth Goodwin, president and co-founder of NDSS. "It's gratifying to see this relationship grow into a more formal partnership. We can accomplish so much more when we work together."
This historic partnership culminates the first phase of NDSS's successful Thresholds strategic planning and fund-raising campaign, bringing the campaign to a total of $4.2 million in gifts and pledges, well over the $3.5 million goal. "We're grateful to the NICHD for enabling us to take this significant step forward in Down syndrome research," said Thomas F. Robards, chairperson of Thresholds. "This partnership will open the door to major scientific advancements that will benefit all individuals with Down syndrome as well as countless others."
"The alliance will bring both organizations closer to realizing the shared goal of improving the lives of all the people we serve," commented Myra Madnick, NDSS executive director.
Diaper Rash and Prayer
Our son Emmanuel was born with Hirschsprung disease and after the surgery the dreaded diaper rash sets in. We went through three pediatricians until we found the perfect one. Pediatrician number three solemnly declared that these rashes do not go away until the child is potty trained, as per example of one of his patients. Then, to set the proper mood, he mentioned the higher incidence of Leukemia in children with Down syndrome, as if we had not done our research already.
My wife Gloria refused to accept Emmanuel's raw rashes and badgered our Gastroenterologist for ideas in the art of rash prevention after a pull through surgery. Perseverance paid off and Emmanuel is rash free. Our solution was to control his stools with just the right amount of cereal intake, cloth diapers, hourly changing with soap and water, pull through cream, over a base of Lomotrin® applied liberally with prayer, lots of prayer.
The Gastroenterologist got out his notebook, asked us how we cured Emmanuel's rash, and my wife, bless her soul, simply said, "prayer", and that is what the Gastroenterologist wrote.