Jan-2009 Enewsletter

 
 

 

Upcoming Events 

  1. MCDSIG Meeting-Friday, February 20th, from 6:30-8:30pm at the Trinity Lutheran Church in Lansdale. This will be an IEP discussion session and will give an opportunity for parents to share information about their IEP experiences and questions. Childcare will be provided.
     
  2. WORKING IT OUT: HOW TO RESOLVE SPECIAL EDUCATION DISPUTES & AVOID A HEARING

What: An audio-teleconference and Webinar training on the different ways to resolve special education disputes between parents of school-age students and school districts.
Who: Presented by Jennifer Lowman, Staff Attorney with the Education Law Center-PA, Trea Graham, Education Advocate with AdvoKid in Pittsburgh, and Debra Schafer, Special Education Consultant in Exton.
When: Wednesday, January 21, 2009 from 9:30 a.m. – 12:00 p.m.
Where: Arc of Montgomery, Berks, & Bucks Counties, Schnecksville
Audience: Parents, parent advocates, attorneys, school administrators, regular and special education teachers, and other interested persons with some basic knowledge of the special education system.
Register: For more information on the training or the site nearest you, contact Irene McClendon at 215-238-6970, ext. 301 or imcclendon@elc- pa.org. Please give your name and the site at which you would like to attend. Although this training is free, we ask that you pre-register by January 7, 2009 to secure a space. Walk-ins are welcome as space permits.  Please notify Ms. McClendon by January 14, 2009 if you need special language or disability accommodations.

  1. Eastern PA Down Syndrome Center hosts,  Home, Health and Future VIII  mark your calendars March 21, 2009 (Trexlertown, PA) details to follow.
     
  2. CHOP hosts Trisomy 21 Symposium mark your calenders April 4, 2009 (Philadelphia, PA) details to follow.
     
  3. NDSC 37th Annual Convention-Registration for the convention hotels in Sacramento is ongoing, and the rooms are booking steadily. Visit NDSC website for more information about room registration. http://www.ndsccenter.org/news/events.php

    The convention planning committee is working diligently to design an exceptional program, and hopes to open convention registration by March.
     

  4. Little Wonders-PARENT NETWORKING GROUP-FREE Informal Meeting for parents to meet and share information. All parents or caregivers of children with special needs are welcome to attend. No children please. Guest Speaker: Dr. James Coplan, MD-“Choosing the right services for the child with Autism Spectrum Disorder (ASD)”Tuesday, January 27th at 7:30pm (RSVP is preferred, but not necessary) email: eric@littlewonderscenter.com or call 610-275-KIDS www.littlewonderscenter.com

 

Adoption

  1. Parents who give up their Down's syndrome children
    Sue Lester, 45, is a proud mother of three children. In every room of her neat house on the outskirts of Bristol are photographs of her children. There's her eldest, 24-year-old Leanne, a nurse; her youngest, 18-year-old Jacob, on a university gap year; and her middle child, 19-year-old Nathan.
     

  2.  Down syndrome adoptions rise
    Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.  

Research and Medical News

  1. Down's Syndrome birth rate increase
    More babies are being born with Down's Syndrome than before pre-natal screening for the disorder was introduced at the end of the 1980s, it was revealed.
     

  2. Scientists reveal Down's Syndrome womb breakthrough
    Pregnant women who know their unborn children have Down's syndrome might soon be able to prevent some symptoms before giving birth, scientists have claimed.
     

  3. New Cuban Research on Down Syndrome Children
    http://www.escambray.cu/Eng/Science/Stdownsyndrome0812021158.htm
     

  4. Future Of Public Health Research On Down Syndrome Discussed By Experts
    Down syndrome, the most commonly identified cause of cognitive impairment, occurs in approximately 1-in-700 births in the United States. Additionally, nearly 80 percent of fetuses with Down syndrome are lost before birth
     

  5. Moonsleeping bad for spacewalking
    Day three of the Society for Neuroscience annual meeting offered news about Down syndrome and sleep cycles.
     

  6. How Chromosomes Meet In The Dark: Switch That Turns On X Chromosome Matchmaking  A research group lead by scientists at the University of Warwick has discovered the trigger that pulls together X chromosomes in female cells at a crucial stage of embryo development. This is an important mechanism as the binding together of too many of too few of a particular chromosome can cause a number of medical conditions such as Down Syndrome.
     

  7. Guinness notes Minn. man as oldest with Down  An 80-year-old Waseca man has been recognized by the Guinness World Records for being the oldest known person with Down syndrome. (this will also be in Inspirational News!!!)

Inspirational Stories

  1. 5-year-old with Down syndrome helping Locks of Love
    Jamie Randolph’s 5-year-old daughter Anna had never had a real haircut and her hair was below her waist. Now Anna, who has Down syndrome, has a new look and has helped the Locks of Love program.
     

  2. http://www.dylankarts.com/
    This is the website of an artist and performer who has Down syndrome.  He is a talented man and this website is very inspirational!
     

  3. 'Big E' enjoys unique connection with students
    With a mix of unpredictable patter and a stand-up comic's timing, 16-year-old Eric Baker's weekly rendition of school announcements has made him a cultural phenomenon among his Reeths-Puffer classmates and teachers. Baker, who was born with Down Syndrome, gives the announcements every Friday.
     

  4.  Boy Scouts with Down Syndrome Receive Eagle Award
    A 31-year-old Boy Scout with down syndrome obtained a special recognition Thursday-- the Eagle Award. Tim Van Skyhawk received the award along with two other Boy Scouts who also have down syndrome. The award has an age limit of 18, but there are except for special needs scouts. Tim earned 37 merit badges, qualifying him for the award. FOX 13's Bob Evans has the story.
     

  5. Parma artist returns from White House
    PARMA -- A Parma woman who has Down Syndrome has returned from the White House after seeing one of her creations hung on the White House Christmas tree.
     

  6.  Unforgettable day with heir to throne
    A SEVEN-YEAR-OLD with Down's syndrome was given the opportunity of a lifetime when a national charity invited her to meet Prince Charles at Clarence House.
     

  7.  GiGi's Playhouse Holiday Fashion Show
    Lily Jorgensen, 3 of Crystal Lake, walks the runway in the GiGi's Playhouse Holiday Fashion Show at the D'Andrea Banquets and Conference Center on November 16, 2008. Gigi's Playhouse, a Down syndrome awareness organization, raised $5,000 to go toward the funding of their new facility in McHenry.
     

  8. Sun.star Essay: The giving 
    ANTON is almost 20 years old but he has the heart of a child. During the opening of gifts at Christmas Eve, this special child with Down Syndrome loves to discover presents wrapped in red and golden ribbons under the Christmas Tree.
     

  9. First Person: Older sibling has hero of a brother 
    Few people teach spelling to those they look up to. Few people idolize 11-year-olds with Down syndrome. More people should.
     

  10. West Akron swimmer wins medals at international event 
    West Akron resident Todd Eisinger won gold and silver medals in freestyle and breaststroke events at the Down Syndrome International Swimming Organization World Championships, which took place in Albufeira, Portugal, Nov. 27 through Dec 4.
     

  11. Guinness notes Minn. man as oldest with Down 
    An 80-year-old Waseca man has been recognized by the Guinness World Records for being the oldest known person with Down syndrome. (this will also be in Inspirational News!!!)

Prenatal 

  1. Newsweek Examines New Testing For Down Syndrome, Effect On Abortion
    Newsweek in its Dec. 15 issue examines the possible effect of new, noninvasive tests for Down syndrome on the number of abortions that result from positive tests for the disease. About 90% of women currently choose abortion following a positive test for the condition, and about 5,000 fetuses that test positive for Down syndrome are delivered annually

Books

  1. Road Map to Holland
    How I Found My Way Through My Son's First Two Years with Down Syndrome
    It's received endorsements from noted professionals such as Emily Perl Kingsley, Martha Sears, Dr. Brian Skotko, and it was recently given a 2008 Excellence in Media award from the National Down Syndrome Congress. One feature of the book that's not available anywhere else is its resource section. It lists every book, website and DVD currently available to parents and professionals, with a brief explanation of each title, what it covers, and who it might appeal to.  Also, there's a glossary of terms and an index of all the national organizations. The book is available in a trade paperback format and is currently retailing for just over $10 -- the author has been able to work with the publisher on obtaining even deeper discounts for group orders. Visit the web site for more information: http://www.jennifergrafgroneberg.com/pinwheels.html
     

  2. Slices of 'America'
    At a time when many people are dissatisfied with the state of our nation, one special Nantucket man offers a fresh perspective. Connor Gifford, 26-year-old who has Down Syndrome, penned "America According to Connor Gifford" along with author Victoria Harris. Because the late Tim Russert was a fan, the book is dedicated to the political journalist. see interview at http://today.msnbc.msn.com/id/26439800/  

 

Education

  1. The Significance of Goals in Your Child's IEP by Hillary D. Freeman, Esq. According to the IDEIA, students are entitled to a free appropriate public education (“FAPE”) in the least restrictive environment. In order for a program to be appropriate, a student’s Individualized Education Plan/Program (“IEP”) must include measurable goals that are designed to address the student’s unique needs. Likewise, the student needs to be afforded adequate instruction to ensure he or she makes meaningful progress towards those goals. http://www.hinkle1.com/html/col105.html
     

  2. Wrightslaw's Special Ed Advocate -- 10 Tips for Good Advocates
     http://www.wrightslaw.com/nltr/08/nl.1202.htm
     

  3. Education for Medical Professionals  NDSC New Medical Professionals Tutorial
    The guide features physicians George Capone, Laura Cifra-Bean, Sig Pueschel and Brian Skotko discussing medical facts about Down syndrome and sharing their thoughts on how best to deliver the diagnosis. The video tutorial is designed to give doctors who deliver the news accurate information that they can access quickly.  It addresses both pre-natal and post-natal settings, and is a resource we are sure you'll want to recommend to physicians in your area.
    URL: http://www.ndsccenter.org/physiciansguide/

Support the DS Community

  1. Support for NDSC

The NDSC continues our partnership with flowerpetal.com in our fundraising efforts. http://ndsccenter.flowerpetal.com If flowers are on your shopping list, know that 12% of all sales made on the site will be donated to the NDSC.

 On a larger scale, you can also support the NDSC by donating any unwanted vehicle, running or not. http://www.ndsccenter.org/support/vehicle.php

  1. Support Ds Research while shopping

There is a feature on the DS Research and Treatment Foundation website that allows you to support DS
research while shopping at your favorite stores online. Lots of stores from Old Navy, Wal-Mart, Shutterfly, iTunes, Mimi, Orbitz, Marriott Hotels, Petsmart, Discovery Toys and SO many more!
Check it out before you do your online shopping!
http://www.downsynd romestore. org/ <http://www.downsynd romestore. org/>

 

Adults with Disabilities

  1. Down syndrome kids set to outlive parents
    WASHINGTON -- Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield, Va., woman, crossing streets can be frightening. Keeping track of money is difficult. And fending for herself is challenging at times for a person who loves to read but has difficulty with novels above a fifth-grade level.
     

  2. Down syndrome patient at home in 'new' family
    Donald Rothstein greets a visitor with a courtly kiss on the hand and a happy “Hello, how are you?” Sitting in his favorite chair in the living room of a spacious ranch home facing a big-screen TV, he is living the life that he always wanted – as part of a family. Photo caption: Donald Rothstein, 72, holds Gadget on his knee at home. He has Down syndrome and lives with Chuck and Nikki ...
     

  3. Down syndrome doesn't stop Jesuit honorary coach
    Jesuit honorary assistant football coach Luke O'Brien is primed for a big night.

Videos

  1. Lord Wedgwood has pledged his support to The Sue Buckley Research Fund, creating a new annual award for contributions supporting Down syndrome research. Watch the video...     The Sue Buckley Research Fund is managed by Down Syndrome Education International and supported by Down Syndrome Education USA. Down Syndrome Education International is a UK charity, no. 1062823. Down Syndrome Education USA is a nonprofit incorporated in California, USA.  This website contains a reading program for children with Down syndrome and a lot of valuable information on education and Down syndrome.
     

  2. NDSC "We're More Alike Than Different" Video Online
     http://www.ndsccenter.org/morealike/flash/
     

  3. News Coverage of Glenside Elementary Buddy Walk (this is the walk that members of MCDSIG put together) NBC10_Glenside_BuddyWalk.wmv (705KB), 6ABC_Glenside_BuddyWalk.wmv (2438KB)
     

  4. Inspirational video about a high school student with Ds and his teammates- Andrew Lawson is a popular senior at Norwell High School who plays varsity basketball. He also has Down syndrome. By Ann Silvio and Bill Greene, Globe staff.  This is a must see!!!!  (if you don't see the embedded file below, click this link)