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NEWS |
6-26-08
Can You Race several Ironmans in a Year?
LISTEN NOW
Michael
Hennessey is on a mission to race several Ironmans this
year in an effort to raise awareness about a chromosomal
disorder in babies called Trisomy. Today on Endurance Planet we
hear about the amazing effort. ...
Main
site click here
EndurancePlanet.com Interviews
More> |
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Julie, mom to Wyatt has a beautiful
caringbridge
site where she journals the daily happenings with little sister Jolene (born
11/28/07) diagnosed with bilateral retinoblastoma, a rare eye cancer. Julie
shares how she “Saw a Miracle at St. Jude...” |
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PATIENT CENTERED CARE - Barbara Farlow, mom to
Annie spoke at the First
Annual Sue MacRae Lecture On Ethics and Patient-Centred Care
on June 11th, 2008
CLICK TO VIEW NOW |
Prenatal biochemical screening only detects half of chromosomal
abnormalities
EUREKALERT Jun 1 2008, 6:28 PM EST
European Society of Human Genetics
Women should be better informed before deciding to undertake it.
Barcelona, Spain |
Foetal screening 'misses defects'
BBC News - UK
Pregnant women are offered a number of tests
Tests used in pregnancy only pick up half of potential
chromosomal abnormalities, Italian research warns. |
Photographer Documents Terminally Ill Infants
(CBS 5) Reporting Thuy Vu |
Dangers of Prenatal Testing 
April 13, 2008
Reporter: Jane Hansen -
An ultrasound screening test at 12 weeks is now considered a
routine part of pregnancy,
but an eminent British Radiologist claims the test, designed to
pick up chromosomal abnormalities like Down syndrome, is highly
inaccurate.
Also available on
Trisomy Oz Breaking News Page |
 SOFT
International Conference
July 23 -July 27
Denver, Colorado |
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Death Talk
-
a FREE podcast available online or through iTunes, hosted by Dr.
Joanne Cacciatore and Katie Dean on the Global Grief Network.
Exploring biopsychosocial effects of tragedy and experience the
wisdom inherent in the mourning process. Topics such as cultural
responses to loss, ritualization, empiric research, and the
neuroscience of loss. |
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Minutes to Memories -
Article about Aimee Weathers and the gift of nine minutes with her
daughter Sophie Ann |
Corbin’s mom Robin helps
bring attention to Trisomy 13 as we launch March as Trisomy
Awareness Month.
News Article |
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New support Organization for Mom’s facing a terminal diagnosis Strings of
Pearls email:
stringsofpearls@gmail.com |
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MISS Foundations Featured Video
-
Founder and CEO, Dr. Joanne Cacciatore, talks about this amazing
organization. |
Not Compatible with Life, a diary of keeping Daniel
By Kylie Sheffield
Kylie (mom to Daniel) would
love to share her book with you. |
Celebrating Trisomy 13 Awareness Day
A Mother's Grief Helps Others News Article |
 Tangible Memories
MSNBC video for babies who are likely not to survive birth
Healing the Heartbreak - The Power of Baby Photos |
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Books available from SOFT
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After
the birth of Anna, Mom, Sarah, was
inspired to begin a business and ministry...
 B
is for Baby
"Burp-Cloths, Bibs, Blankets and More" hand-made
baby and toddler items made with a mother's love. On behalf of each
order received, an item (i.e. burp-cloth, bib or blanket) will be
donated to a local hospital; to be distributed to babies with special
health issues, babies born premature or families in need. |
Orleans man defies predictions, lived 34 years with rare illness
Greenville Daily News, MI - Jan 11, 2008
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Parents hope for miracle for their little angel - Monitor, TX - Dec 15,
2007 |
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Trisomy Voices
A collection of AUDIO interviews with families touched by trisomy 18, trisomy
13, and other rare trisomy disorders. |
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Please join us in praying at 3:00 pm (central time) for our beautiful children
affected by trisomy 13 |
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Don't Miss!! |
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Prenatal Diagnosis Information
Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
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TRISOMY AWARENESS Ideas |
 Trisomy 13 Awareness
Bracelets - designed and sold by Daena Seland
This beautiful and one of a kind bracelet, made of sterling silver,
Swarovski crystals and pearls was designed with the hope of increasing
the awareness of Trisomy-13 and offer families a token of strength,
remembrance and most of all love. |
  When making up personal business cards, remember to add your URL addy page
to your child, hence spreading more "trisomy awareness." You never know who
may remember this site when approached by someone diagnosed with a trisomy
condition. (or Click here to
download printable LivingWithTrisomy13.org "awareness cards.")
 Create
a free video montage at OneTrueMedia for your child - add as many photos or video clips as you
like and your favorite song. Celebrate your child's life and create a
personal message to all who might view the presentation. (Be sure to add a link
to their web site or to their LivingWithTrisomy13.org page.) Then send out a
link to your child's page or montage with your holiday greeting!
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TRISOMY 13 – Patau Syndrome
IN THE NEWS |
 FREE ~New Family
Package from SOFT
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Healthcare professionals available to
message board members! "Ask the
Pediatrician"
"Ask the Geneticist"
"Ask the OB-GYN"
"Ask the Dentist"
“Ask the RN” ~ Labor & Delivery and NICU experienced.
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Google
New Search – Trisomy 13
Google
News Search – Patau Syndrome
DOGPILE – Trisomy 13 News Now Searching: Yahoo! Search, Topix, FOXNews, ABCNEWS,
And More
DOGPILE – Patau Syndrome News Now Searching: Yahoo! Search, Topix, FOXNews,
ABCNEWS, And More |
Site Updates:
July 7, 2008
July 5, 2008
- See video of Ironman Michael Hennessey's journey for trisomy
awareness
- Video presentation added to Logan
Hunter Popejoy's memory album
July 3, 2008
- Update and photo added to two year old
Stephen Fox's album
July 1, 2008
June 16, 2008
June 14, 2008
June 11, 2008
June 9, 2008
June 7, 2008
June 4, 2008
- Update added for Zoey who is now in
heaven, resting in the arms of Jesus.
May 31, 2008
May 28, 2008
May 25, 2008
May 16, 2008
May 15, 2008
May 14, 2008
May 12, 2008
May 10, 2008
April 27, 2008
April 24, 2008
April 23, 2008
April 21, 2008
April 20, 2008
April 17, 2008
April 16, 2008
April 15, 2008
April 14, 2008
April 12, 2008
April 11, 2008
April 8, 2008
April 6, 2008
April 5, 2008
- 2008 Living with Trisomy 13 SURVEY -
Deadline is quickly approaching. Investigating the
common T13 experience and helping to update the current literature
written on the children diagnosed with Patau Syndrome. If you’d
like to participate contact us ASAP.
info@livingwithtrisomy13.org
April 4, 2008
April 3, 2008
March 23, 2008
March 16, 2008
March 14, 2008
March 13, 2008
March 9, 2008
March 6, 2008
- 19 month old Samuel Mabeus
went home to the arms of our Lord on Friday, February 29th
February 26, 2008
February 24, 2008
February 20, 2008
Previous Updates >
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Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
