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As you might guess Rose and I have been
a little busy with the baby, the fling and work. I wasn't
able to send out a newsletter the end of last month.
I. There has been a lot of development and media attention
to the prenatal screening, so I will be sending out a separate
letter strictly devoted to that topic.
- Thank you – The spring fling
went smooth. I got a lot of positive feedback.
Rose and I would like to thank the many families that helped
out by bringing things, lending a hand setting up and tearing
down and keeping the fling on track! I hope everyone
who attended had a good time, got to meet new people and
learn new things.
- Sport Opportunities:
- Soccer: A soccer league
forming for physical and/or mental disabilities in the
Harleysville/Soderton area. Click
here to view the brochure. Signup early
to get a spot, the deadline is end of June
Contact:
Chris Ryan
TOPSoccer Coordinator
and
Director, Intramural
& Rec Programs
(267) 640-6015
soccerspikes@comcast.net
- Golf:
www.golfforlife.org has free golf clinics offered
exclusively to individuals of all ages who have Down syndrome.
Click
here for the registration brochure for the 2007 "Golf
for Life" clinics. If you are interested,
fill out the form and mail in your registration as soon
as possible if you are interested in attending.
The first golf clinic is on Saturday, June 9th.
- Information Meetings/Training:
- THE
ARC OF MONTGOMERY COUNTY has programs throughout the
year. Click
here to view the brochure.
I attended the transition one in April and learned a lot.
- The
Pennsylvania Training Partnership for People with Disabilities
and Families – offers many training sessions.
Click here to view their training calendar.
- Book: "Aunt Mommy"
Written by a friend of one of the BCDSIG parents, Aunt Mommy
is about "Jordan Lee, an amazing little boy with Down
syndrome. Tossed in the throes of a drug-infused environment,
Jordan Lee is rescued from an unstable beginning and soon
finds himself thriving in the loving care of his Aunt Mommy."
You can pre-order the book by visiting the Tate Publishing
web site.
- Shopping:
The Polkadot Platypus is an online shop full of beautiful
baby and maternity items and gifts. Portions of the proceeds
go to
Downsyn.com.
- Mother Montage:
This site compiled pictures of mothers with their children
who have Down syndrome.
- Resource : Care Notebook from
CHOP
The Care Notebook is an organizational tool to keep all
medical and educational materials in one place, making it
easy to retrieve the right piece of information for the
doctor, the school, the babysitter and the rest of the family.
Call or e-mail to sign up for a one-on-one or group session,
at which you will learn how to use the notebook, including
which records to keep in the notebook and how to maintain
records on a continuing basis. Contact CHOP at (267) 426-5360
or
trisomy21@email.chop.edu
- Down Syndrome Research:
Kennedy Krieger Institute/Johns Hopkins University/Emory
University : Down Syndrome Research Related to Congenital
Heart Disease
The three organizations above are currently looking to enroll
600 children born with Down syndrome and atrioventricular
septal defect (AVSD), commonly called AV canal, and 600
children born with Down syndrome and without any structural
heart defect. The children must be under the age of 18 years
old. At their convenience, parents will need to complete
a telephone interview regarding possible exposures during
pregnancy, familial risk factors and reproductive history.
Additionally, parents will be asked to donate a saliva sample
for DNA analysis. Adolescents and children will be asked
to donate a small blood sample for DNA analysis. The blood
samples can be drawn during a regular visit to Kennedy Krieger
or Johns Hopkins or by arrangement with your primary care
physician. They will ask to obtain your child's records
(such as Karyotype and Echocardiograms). There are no direct
medical benefits or significant risks for participating
in the study. A flier about this study is attached in PDF
format.
If you are interested in participating, please contact:
Charnan Koller, RN, CCRP, and Research Coordinator, at the
Kennedy Krieger Institute at (443) 923-9131 or (800) 873-3377
ext. 9131 or
koller@kennedykrieger.org
- Articles:
"Saintly
Scientists: Hate the Disease, Love the Diseased"
An article about Jerome Lejeune, the French scientists who
discovered Trisomy 21.
You can read the story online by clicking here.
"Down
Syndrome Parents Get Potty-training Tips"
You can view the full article online by clicking here.
"Balancing education of special-needs students -- Inclusion
Program Isn't Always Best, Critics Say"
You can view the full article online by clicking here.
Inspirational
Articles
Adopting children with Down Syndrome
The Down Syndrome Lowdown
Truckers are good buddies to Down Syndrome kids
Down's syndrome man gains black belt
Against the Odds: Abilities NOT Disabilities
Local woman on big screen
Pippo Delbono: 'Italy's theatre-scene has died a death'
College is about learning from experiences
Stallings keeps his eye on Tide
One thousand to lose hair to raise money for Down Syndrome
services
Student project teaches understanding
Praise for caring schoolgirls
Young adults with Down syndrome find acceptance at a prom
of their own
They've got spirit: New Hanover team lets special-needs
cheerleaders shine
Defying the odds, setting her own limits
Omaha mom champions daughter's potential
Special honor for special-needs teacher
Meeting
Matthew
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