Enewsletter 06-Jun-2007
 
 

 

1.      A Mother's Request:  Priska mother of a 4 year old will be entering the Methacton School District.  She would like any information about that district.  Please e-mail her at Priskanjo@hotmail.com or give her a call at (215) 879-1537 (home) and (267)253-9771 (cell).

 

2.      Mannetech makes more news.  This is the supplement that alludes to treating uncurable ailments.  See 20/20's take on it. 

 

3.      A Congresswoman from Washington State recently gave birth to a son who has Ds.  Read the article here.  Her and Cole are doing fine.  This event is always life changing and I'm curious how this changes hers.

 

4.      More Famous People:  Cole isn't the only person with Ds related to a famous person.  Below is a list of people from present and past who have been touched the way we have:

 

·        John C. McGinley, an actor from the TV show Scrubs and in the movie Office Space, has a son Max (9) with Ds.

·        Emily Perl Kingsley- was an early writer on Sesame Street and the author of "Welcome to Holland". Her son Jonathan Kingsley co-authored "Count Us In."

·        Cullen Douglas – actor with a son who has Ds.

·        Eva Longoria – One of the desperate housewives has a sister with Ds.

·        Jamie Foxx – has a sister with Ds

·        Frank Sesno – a special correspondent on CNN has a sister with Ds.

·        John Loudon – A Missouri state senator with an adopted son with Ds.

·        Charles DeGaulle had a daughter with Ds

·        Albert Einstein had a daughter with Ds

·        Julie Newmar – The first Catwoman on Batman has a son with Ds

·        Roy Rogers and Dale Evans had a child with Ds

·        Hubert Humphrey had a grandchild with Ds.

·        Eleanor Holmes-Norton, the D.C. delegate to the U.S. Congress, has an adult daughter with DS.

·        Senator Lowell P. Weicker, Jr. a son with DS

·        George Will, columnist, a son with DS

·        Romario, Brazilian soccer star, daughter with DS

·        Pete Sessions, current member of congress, from Texas, has a son with Down
syndrome.

·        Albert Pujols, a star player for the St. Louis Cardinals baseball team has a daughter Isabella with Ds.

·        Brian Wilson, a former politician from Dunoon, Scotland, son with Ds.

·        Damon Hill, formula one champion, son with Ds

·        Steve Riggio, CEO of Barnes & Noble, has a daughter with Down syndrome

·        Joe Diffie - a country singer has a son with Ds

·        Brian Rix actor had daughter with Ds

·        Domenic Lawson british journalist has a daughter with Ds

·        Rex Hudler, who was a professional ballplayer and now works for the Anaheim Angels, has a son with DS.

·        Gene Stallings, NFL player son with DS

·        Buddy Bell, son of Gus Bell and father of two major league players, manages the Royals. daughter Down syndrome.

·        Princess Diana had a very good friend with a daughter who had DS (may have even been the godmother).

·        Aaron Beasley of the Atlanta Falcons and a local man had an uncle w/ Ds.

·        Beau Geisler, Stockton Thunder defenseman, twins with DS

·        Eddie Lewis who is a soccer player from California who plays for Leeds United in England has a son with Down syndrome.

 5.      Great Website:  Dr. Bob Sears, pediatrician, author, is another father whose son helped inspire his work.  Visit his website, it is loaded with information!
 

 6.      The Gifts Book has been in our newsletter many times.  Recently it was featured on Action News Health Check. View it here.   There is a movement to get these books in pediatrician and new parent's hands.  MCDSIG will be purchasing copies and donating them to OBGYNs for their waiting rooms.  We will put our information on the inside cover.  I'll keep you posted as these progresses.
 

 7.      More on Prenatal Testing:

 

Imagine if Down Syndrome Babies Were No Longer Born - This article ran in the Philadelphia Inquirer.

 Testing for Defect, Living with Decisions

 Valueing the Disabled – a Washington Post article

 Prenatal test for Down syndrome: Good idea?

Beyond the Diagnosis: The joys of a child with Down Syndrome – this is more inspirational, but is part of the news in-depth look at the testing.

 8.      Inspirational Stories:

 

Family of 10 bikes 1,100 miles to raise Down Syndrome awareness (Watch VIDEO)

 "Dream" video (from the National Down Syndrome Society) NDSS YouTube clip.

"Life is a Celebration" video (a photo montage created by a parent)

Scholarship honors NE Jones graduate, helps future educators

The Firedog Across America Winner: Chickahominy Volunteer Fire Department Station #10!

Good sports make great athletes

Mark McNally had great appreciation for life and love

These three sisters have a special bond

Down Home Ranch getting national attention

 Citizen Writer Wins Award for Story on Down Syndrome

 

9.      Educational Related

 Did you ever hear about Low Expectation Syndrome?  It is when you or someone else has low expectations for your child's progress.  Here is an article that sheds some light on it.

Wrightslaw Special Ed Advocate has a newsletter out.   To view the latest edition of the newsletter online, click here.

 

10.  Health Related:

 

Many of our children are diagnosed with a sensory disorder.  Dr. Pipan from CHOP spoke about this at the DS symposium.  The New York Times ran an article that gives more information and discusses the difficulty of it.  Click here to read the article.  On a personal note, Josh does the arm flapping and jaw popping.  We have worked with his therapist to address this and we have found that a chew tube is good at redirecting it and a surgical brush across his palms helps prevent it.  Feel free to ask us about our experiences with it.