Enewsletter 22-Aug-2007
 
 

Events/Things to Attend

  1. Girls on the Go
    When:  Date Changed this will be Nov 4th!     check the website for updates...... http://forthegirls.org
    Where:  Horsham Library, 435 Babylon Road, Horsham, PA 19044
    What:  Horsham Library are offering an exciting new program called Girls on the Go.  This program is a social program designed to foster self-esteem, social skills and life skills for females with disabilities ages 16-25 years old. This event will be focusing on several different areas for these young women including: social skills, dressing for success, hair and make-up, healthy eating and posture. They are also looking for volunteers as well as donations (makeup, hair products, etc.) for this event. To volunteer, donate or for more information please contact Lisa Burns at Peaceful Living at (610) 287-1200.

  2. Buddy Walk in OCNJ
    When:  Saturday, Sep 15th, 10:30-3
    Where:  Ocean City Music Pier (Moorlyn Terrace & Boardwalk)
    What:  A NJ group, 21 Down, hosts a buddy walk on the boardwalk of Ocean City NJ.  T-shirts are given to all walkers (while supplies last) and at the end of the walk you get to ride for free at an amusement pier for 2 hours (if you raised $30 or more)!  This will be the 3rd year Rose and I will be attending.  It is a great time, a good way to support our neighbors and fun to meet new families.  If you want more information email me and I will send you the registration and information.  Their website isn't updated, but if you'd like to see more about them visit www.21Down.org .

  3.  MCDSIG pizza in the park
    When:  Friday, Sep 21st, 5:30-7:30
    Where:  Upper Gwynedd Park-Sci Playground
    What:  Join us for pizza and play at the Upper Gwynedd Park-Sci Playground.  Official invite with RSVP information will be going out soon.  Pizza will be served at the picnic tables next to the playground.  Adult supervision is required when your young ones are playing on the playground.  Please keep in mind that we will be sharing the playground with others.

  4. Friends of Trisomy 21 Center Buddy Walk
    When:  September 30, 2007, 10 - 1 P.M.
    Where:  Villanova University Stadium
    What:  This family fun day benefits individuals with Down syndrome through the Trisomy 21 Program at The Children’s Hospital of Philadelphia.  Visit the website for information:  http://www.tri21center.org . This is always a great time and many of our familes help put this event together!

 

Brother's and Sisters:

  1. Disability Solutions is a publication for families and others interested in Down syndrome and developmental disabilities.  A particularly good article is in a 1997 issue that reminds us to focus on all of our children, not just the disabled one.  Rose and I are just starting to work with this.  Here is the issue, it is worth checking out:  http://www.disabilitysolutions.org/newsletters/files/two/2-3.pdf

 

Inspirational/Other's Stories 

  1. UNF helping college dreams come true – University of North Florida has an authentic college experience for disabled.  This article follows a 19 year old girl with Ds.

  2. Records broken in bikeathon with Down Syndrome participants – 24 hour long stationary bike marathon in Singapore.

  3. Strong-willed Heart - In the six year since her heart transplant, 9-year-old Reagan Turner has beat the odds and surpassed doctors' expectations

  4. National Down Syndrome Congress convention in KC shows how times have changed – The NDSC convention was in Kansas City in July.  MCDSIG will like to sponsor one of our families to attend next year (the admission only) and have them present to the group.  Stay tuned for more.

  5. UTSA class uses games to help special kids develop – College students fool children into physical theropy.

  6. Jack's little heart -  An Australian's family's story about the birth of their child and his progress.

  7. Gymnast prepares for 2007 Special Olympics – article/news report that details a man's preparation for the Special Olympics.

  8. Eastview junior doesn't let Down syndrome dampen his team spirit – A great story about peer acceptance because of inclusion.

  9.  Building job skills, friends - Colin Goodwin, 18, a South County resident who has Down syndrome, has spent part of the summer gaining real-world experience by volunteering at the Kirkwood Fire Department.

  10.  Shopping mall organizes charity gala for special kids – A cool story about a mall fashion show designed to raise awareness and be fun.

  11. Golf camp challenges special kids - A story on the Golf camp.

  12. A new perspective on family – A Illinois family shares their experience of their new child.

 

Submit a Story

  1.  March of Dimes "Every Baby Has a Story" Video Contest
    The March of Dimes is having a video contest nationwide to find the best baby story out there. The contest theme "Every Baby has a Story" celebrates all babies, those who are born healthy and those who need our help to survive. The video can help raise awareness of an issue like premature birth or bring attention to the desperate need for health care coverage for women and babies. It can be a personal story, or about the experience of many babies and families. Our one piece of advice is to include both urgency and hope, because we know that most people need both of these elements to be motivated to do something. The winner of the video contest will receive a Grand Prize of $5,000 and the winning video may be broadcast by the March of Dimes as a public service announcement. Check out the following link for more information. The deadline for entry is September 28, 2007 at Noon .
    URL: http://www.marchofdimes.com/pad/videocontest/HowToEnter.asp

 

Prenatal

  1.  Down's syndrome test 'risk to healthy babies'
    Screening tests for Down's syndrome could lead women to undergo needless invasive tests and risk miscarrying healthy babies, a doctor warned yesterday.

  2.  Is Ultrasound As Useful As We Think?
    The usefulness of fetal 'nuchal thickness' as a technique for attempting to diagnose Down's syndrome in obstetric ultrasound is overstated and reliance on this surrogate marker may result in the 'loss' of normal babies, according to a recent article. The author raises the possibility that ultrasound is not as useful as has been suggested.

  3.  Don't Count Down Babies Out in the Womb - Words of wisdom from the North for everyone.

  4.  Debate On Earlier Screening For Down Syndrome – A Minnesota TV station picks up the debate.

  5.  Brownback: Disability Does Not Have To Be a Death Sentence For Unborn Babies – Discussion on a bill that would provide clearinghouse of parents willing to adopt children with disabilities

 

Science/Medical/

  1. Chromosome 21 and Down syndrome: from genomics to pathophysiology
    The sequence of chromosome 21 was a turning point for the understanding of Down syndrome. Comparative genomics is beginning to identify the functional components of the chromosome and that in turn will set the stage for the functional characterization of the sequences.

  2.  CU study: Alzheimer's drug can help with Down syndrome - Medical researchers in Colorado say it is promising. They have uncovered clues that could help reverse the learning deficits associated with Down syndrome.

  3.  Celiac Disease and Down Syndrome – The link between Celiac and DS is discussed

 

Educational

  1.  The Role of Music in Enhancing Children's Expressive Speech and Language Skills – How singing helps with language.

  2.  See and Learn
    Stephanie Bissol, a BCDSIG member, attended the NDSC conference in Kansas City and attended an excellent presentation given by "See and Learn." See and Learn is designed to build on the visual learning strengths of children with Down syndrome. It emphasises the visual presentation of language through reading. See and Learn promotes vocabulary and grammar development. Visit their web site for downloads and information. URL: http://www.see-and-learn.org/

 

Safety

  1. Wandering Children – Recent news stories have highlighted the danger of wayward children with DS.  It is a constant fear many of us have.  A new wristband transmitter to help locate missing persons has been developed.  Read the article that discusses it.

 

Political/Legal 

  1. Special Ed Advocate" (Wrightslaw)  Supreme Court to Hear Oral Argument in NYC v. Tom F., Trends in Special Ed Law." Read the full newsletter online at: http://www.wrightslaw.com/nltr/07/nl.0815.htm

  2.  Free Legal Advice - Announcement from Disability Rights Network re Education Services 

The Disability Rights Network of Pennsylvania (a merger of Pennsylvania Protection & Advocacy and the Disabilities Law Project) is pleased to announce that it is now providing legal advice, technical assistance, and information and referral services related to special education and early intervention issues.  DRN began providing this assistance on July 1, 2007.

DRN also has expanded its list of available publications to include booklets and fact sheets related to special education and early intervention services.  These publications, created by the Education Law Center, can be obtained via DRN's web site, www.drnpa.org/publications <file://www.drnpa.org/publications> , or by calling DRN at its toll-free number, 1-800-692-7443.  Publications also are available in alternative formats and in Spanish.

To obtain legal advice, technical assistance, or information and referral services related to a special education or early intervention matter, please contact DRN at 1-800-692-7443. 

Movies

  1.  Praying With Lior - http://dantrachtman.com/lior/

An engrossing, wrenching and tender documentary film, PRAYING WITH LIOR introduces Lior Liebling, also called "the little rebbe." Lior has Down syndrome, and has spent his entire life praying with utter abandon. Is he a "spiritual genius" as many around him say? Or simply the vessel that contains everyone’s unfulfilled wishes and expectations? Lior – whose name means "my light" — lost his mother at age six, and her words and spirit hover over the film. While everyone agrees Lior is closer to God, he’s also a burden, a best friend, an inspiration, and an embarrassment, depending on which family member is speaking. As Lior approaches Bar Mitzvah, the Jewish coming-of-age ceremony different characters provides a window into life spent "praying with Lior." The movie poses difficult questions such as what is "disability" and who really talks to God? Told with intimacy and humor, PRAYING WITH LIOR is a family story, a triumph story, a grief story, a divinely-inspired story

Raising Awareness

  1.  Remember that NDSC awareness grant we were helping to get through American Express Votes?  Well it didn't happen, but the good news is, NDSC still wants to do it.  They are trying to raise $500,000.  Follow this link to find out about the program and how you can help:  http://www.ndsccenter.org/news/morealike.php

 

 

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