Microarray is ‘go-to’ test for multiple congenital anomalies

 Chromosomal microarray testing is ideal for narrowing down the diagnosis in most patients presenting with multiple congenital anomalies, according to Dr. Laurie Demmer...

http://www.familypracticenews.com/news/child-adolescent-medicine/single-article/microarray-is-go-to-test-for-multiple-congenital-anomalies/b4d045de5d76abe6a0a0a3995b13ef8f.html

Team iDO! Race Gear

Team iDO! Race Gear

We are taking request for one final order of race gear just in time for you to receive before the holidays. Please check out the gear and contact us with your order request at shawnsanomaly@gmail.com  

Deadline to order is 9/20/2013, so don't delay. 

Performance Blade Tri Top
$66.00

For Sizing Click Here






Performance Blade Tri Short
$62.00

For Sizing Click Here





Performance Classic Tri Suit
$98.00

For Sizing Click Here

Performance Sports Bra
$46.00

For Sizing Click Here

Custom Technical Performance Short Sleeve Top
$48.00

For Sizing Click Here



Custom Run Short
$44.00

For Sizing Click Here

Lycra Arm Sleeves
$34.00

For Sizing Click Here








Short Sleeve Cycling Jersey
(Available in Kids Sizes)
$58.00

For Sizing Click Here






Cycling Bib Shorts
$74.00

For Sizing Click Here











Warm Up Pants
$78.00

For Sizing Click Here










Warm Up Jacket
$88.00

For Sizing Click Here

New Study Shows Congenital Anomaly Epidemic

One out of every 46 babies born in portions of England and Wales is born with congenital anomalies such as malformed limbs, Down syndrome and heart and lung conditions, according to research published by Queen Mary University of London.
Researchers collected a data set via birth records from six regional registers in throughout England and Wales, with data coverage estimated to be 36 percent of births in the two nations. The study, which used data collected between 2007 and 2011, is being called the most up-to-date and comprehensive ever done of birth defects in the UK

The congenital defects assessed by the survey were broad, covering heart and lung defects, Down syndrome, neural tube defects such as spina bifida, and limb malformations such as club foot.
According to the research, at least 16,000 babies (2.2 percent) born in England and Wales in 2011 had a congenital anomaly, which is a figure higher than what's present in other European countries.
Congenital heart defects were the most common birth anomaly, accounting for at least six in 1,000 births. Of those born with heart defects, 6 percent died before turning one year old.

Gastroschisis, a condition in which the intestines develop outside of the abdomen, appears to be more common in England and Wales than in other European countries, affecting one in 1,000 babies with the data pointing to a growing number of cases in the study area.

Mothers between the ages of 25 and 29 years old showed the lowest instances of babies with congenital anomalies. Congenital anomalies were prevalent in babies of women under the age of 20 and older than 40.

Although the data was pulled from national registers, the researchers were quick to note that it was incomplete.

"We remain concerned that data for substantial parts of the country, including London, are not currently monitored, meaning large regional increases in congenital anomalies could go unnoticed and their causes not investigated," said Joan Morris, from the Wolfson Institute of Preventive Medicine at Queen Mary University. "Currently there are no registers in London, the South East, the North West and East Anglia."

For more information: CLICK HERE!

Facebook Cripples Shawn's Anomaly and Labels as "Spammy"

CLICK LOGO TO GO TO WEBSITE!

Recently we were informed by supporters of Shawn's Anomaly that Facebook considers our website "Spammy"! You can see for your self.  Here are the steps:

Click To Enlarge

1. In your status update type www.shawnsanomaly.org or www.shawnsanomaly.com
2. You will receive a pop up that gives you the the message to the right.
3. If you hit the "let us know" and explain to Facebook that this is a non-profit and that follows all Facebook guidlines similar to other non-profits such as LIVESTRONG, TeamInTraining...etc.  It states that you will receive an email with a response, but they never send an email.

We have tried innumerable times to click on the "let us know" link and let Facebook know that there has been a mistake, but we have yet to receive a response. Facebook also does not offer any type of contact information for the corporate office such as an email or phone number.  This makes this issue seem to go without any resolve. 

Facebook has chosen to cripple a small non-profit trying to spread awareness about birth defects, medical research, and helping families affected by telling supporters and potential supporters that the sites are "spammy and unsafe" We have tried to reach out to them but they have completely ignored all of our petitions and requests to do something about it.

Christian Calcatelli had something similar happened to him.  He wrote, "You know, as I said this didn't happen just last week. It's been 6 long months. Soon I'm getting ready to do an international event and Facebook sharing is essential to the core."

Please help us by sharing the link www.shawnsanomalyNOTSPAM.com with all your friends and your local news channels and clicking on the "let us know" and telling Facebook that this is an error.  Hopefully together as a community we can get this fixed.

Thank You,

Matthew Murphy

Founder/Chairman

UPDATE: 9/21/2013

We have tried to reach Facebook through countless requests in the past 3 months to get this error resolved, but they are still ignoring our request.  We really need your help.  PLEASE share www.shawnsanomalyNOTSPAM.com with all your friends.  We need the community to come together to fix this.

Local Artists Create Commemorative Flag for Children with Birth Defects

Community Voting for “Kona Inspired” Video Will Ensure Local Father Carries Flag across 

Ironman World Championship Finish Line in Kona, HI

(Houston, TX)  Local dad and Ironman triathlete Matthew Murphy is on a mission to save babies with birth defects all over the world. His nonprofit organization, Shawn’s Anomaly, is committed to providing hope, assistance and inspiration to families facing this challenge. And one special locally-crafted flag will help broadcast this message globally.

Matthew is competing in Ironman’s online “Kona Inspired” voting contest to further his mission. If he wins, Matthew will compete in the toughest one-day endurance in the world: Ironman World Championship in Kona, HI. His video tells the story of his own family’s struggle with son Shawn’s devastating journey to overcome rare birth defects. Shawn’s triumphant recovery led Matthew on a mission to transform from an overweight couch-potato smoker to a successful Ironman triathlete, and then to form his nonprofit organization dedicated to the cause.

With community voting support, Matthew will carry the H.O.P.E. (Helping Others; Provide Education) flag across the finish line, featuring the names of children born with various birth defects. If Matthew wins, he will have the opportunity to share Shawn’s Anomaly’s message of help and hope via the worldwide-televised coverage of the event.

In partnership with the Museum of Cultural Arts Houston (MOCAH) and under the direction of co-founder artist Rhonda Adams, director of MOCAH’s Art Angels Healing Arts & Volunteer Network, an art workshop on June 8 will produce the commemorative flag, crafted by community artists and family members of the children represented on the flag. The Art Angel’s mission is to use volunteerism and creative philanthropy to promote social wellness. This helps maintain the uniqueness of Matthew’s journey and will guarantee that the flag will be one of a kind.

Art workshop is on Saturday, June 8th, from 10am-12pm at M.O.C.A.H., 1700 Gregg Street, Houston, TX 77020. Media and parents of children with congenital anomalies are invited to attend.

As a contest finalist, Matthew’s video submission can be viewed at www.sendshawnsironmantokona.com . The community can help ensure Matthew reaches Kona and carries the flag by voting for “Shawn’s Ironman” video from June 17 – June 27 at the same website. Supporters can vote for the video once daily, via desktop and laptop computers and via all mobile devices. Every daily vote counts in the global competition.

• To see more about Matthew & Shawn’s Story watch video at: www.shawnsanomaly.org/shawns-story
• To see more information about the H.O.P.E. Flag and to see the current names on the flag, go to www.shawnsironman.com and click on “H.O.P.E Flag” at the top of the screen.

Shawn's Anomaly Parent Package Program

Every 4 1/2 minutes a child is born with a congenital anomaly/birth defect.  It is the leading cause of infant deaths, but it gets very little attention.  Parents who have children affected by congenital anomalies often feel very alone and helpless.  Shawn's Anomaly was created in 2010 to provide education hope and help to families affected by congenital anomalies after founders, Matthew & Rachel Murphy's son, Shawn, was born with a 1 in 35 million birth defect. 

If a child with a congenital anomaly is taken to a hospital or enters the emergency room and then admitted into the hospital, the volunteers and leaders of Shawn's Anomaly are planning to provide the hospital a decorative bag (created by a volunteer) filled with a blanket, travel pillow, toiletries, etc. to give to the parents. 

The program will start in the Houston area, but hopes to expand to every other major city in the US by the end of the 2014. 

Matthew Murphy states, "When parents leave to go to the hospital, their mind is focused on getting help for their child. They rarely have time to gather things or even know what to pack for themselves. This package is just a small gesture to let them know that people care and want to help."

Each package includes the following:

Shawn’s Anomaly Parent Package
All toiletries are travel size

• 1-Tote Bag

• 1-Travel Pillow

• 1-Fleece Blanket

• 2-Shower Loofah

• 1-Pen

• 1-Notebook

• 2-Shampoo

• 2-Conditioner

• 1-Baby Shampoo

• 1 pkg Disposable Razors

• 1-Shaving Cream

• 1-Hair Gel

• 1-Mouth Wash

• 1 pkg of Q Tips

• 1 pkg of Wet Naps

• 2 Toothbrush/Toothpaste Kits

• 1 Bar of Soap

• 1-Male Deodorant 

• 1-Female Deodorant

"This will take a lot of help from a lot of people all over the US and the world to work," Murphy states, "Anyone can be a part of this program in several ways!"

Shawn's Anomaly needs volunteers who can help organize hubs in other cities and put together the packages. Supplies can be donated at participating Team Shawn's Anomaly events or by shipping to:

Shawn's Anomaly
c/o Parent Packages
3209 Prospect St
Houston, TX 77004

iDO! 5 Team Member Karrie Bellard Interviewed Live at Ironman Texas

Karrie Bellard has trained hard for months to get ready for the biggest race of her life: The Ironman Texas!

This is the same race that Shawn's Anomaly founder, Matthew Murphy, completed in 2012 that inspired other every day athletes to race for Shawn's Anomaly regardless of when and where that event is.

Karrie chose to be a part of Team Shawn's Anomaly for the Ironman Texas, and was chosen to be a part of the iDO! Fab 5.

She set up a fundraiser page for the Ironman Texas with a goal of raise $2,000.  She quickly reached that goal and decided to continue her fundraising effort and raised her goal.  Check our her fundraising page ad watch her introductory video: CLICK HERE!

Karrie grabbed the attention of the Ironman Foundation and they invited her to take place in the featured athlete panel on Thursday, May 15, 2013 at 12:00pm CST.  You can watch the interview live by going to the LIVE EVENTS tab at the top!