H.O.P.E. Flag Challenge (Press Release)

For Immediate Release

June 5,2014

(Houston, TX) Shawn’s Anomaly (http://www.shawnsanomaly.org)is a looking for athletes to volunteer to help spread awareness about children born with birth defects and physical abnormalities. 

Th H.O.P.E. (Helping Others, Providing Education) flag was created to honor and inspire families affected by congenital birth defects. It is covered with the names of children that are affected or have lost their life to congenital birth defects.  Over the past few years, the flag has been carried for many marathons and Ironman triathlons. We can't walk hand in hand with all of the kids across the finish line, but their names can cross with us.

Our goal is to have the H.O.P.E. Flag carried for every marathon mile of every US Ironman in 2014.  We are looking for athletes to help this challenge become a reality.

Shawn’s Anomaly is the only non-profit dedicated to the mission of providing education, hope, and help to families affected by congenital anomalies

Sadly, birth defects are often overlooked by society unless it hits you close to home. Shawn, was born with several birth defects including one that affects 1 in 35,000,000 children. The feelings of hopelessness and the unknown that his parents (Matthew & Rachel Murphy) felt should never be felt by any parent. They decided to do whatever it took to prevent another family from going through what they did again alone.

We are looking for 2014 Ironman participates to carry the flag during the run portion of the Ironman. We are going to document the athlete's stories and training while pairing them up with a family affected by congenital anomalies   The plan to tell each family's story and invite them to be there when the athletes finishes with the flag to catch their reaction. Once we collect all the athlete and family stories, we will then put them in an online documentary series called the Stories of H.O.P.E.

For additional information please contact ShawnsIronman@gmail.com

Information Shawn’s Anomaly: http://www.shawnanomaly.org

Information about the hope flag: http://www.shawnsironman.com/p/hope-flag.html

Information about the H.O.P.E. Flag Challenge: http://www.hopeflagchallenge.com

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Mumbai to get its first birth defect management clinic

By Santish Andhale

http://www.dnaindia.com/authors/santosh-andhale

Prevention is better than cure and preventing something right at the onset is even better. This is what the civic body seems to have decided to follow.

The Brihanmumbai Municipal Corporation (BMC) plans to start a Birth Defect Management Clinic at KEM Hospital to rectify anomalies in children immediately after birth. Many of these anomalies become serious problems later on as parents tend to waste precious time and decide to treat it once the child is slightly older.

The KEM Hospital administration will create a special team comprising a paediatrician, ophthalmic surgeon, cardiac surgeon and paediatric surgeon for this clinic. Apart from hospital doctors, the BMC health department will also appoint super-specialty doctors from outside on a contract basis.

A congenital disorder or disease is a condition existing at birth or one that develops during the first month of life (neonatal disease). Birth defect is a widely used term for a congenital malformation, ie a congenital, physical anomaly which is recognisable at birth and which is significant enough to be considered a problem.

There are several children who are born with defects like squint, cardiac problem and bone disorder among others.

Director of medical education, BMC, Dr Suhasini Nagda said, "Chances of a child with an anomaly leading a normal life are higher if the problem is detected early and treated on time. But either there is lack of awareness among parents or they don't get proper advice about the disease and treatment. That's why we have decided to open a dedicated clinic at KEM Hospital, where doctors will only work on cases of birth defects. We have already started a special outpatient department for such cases. Parents can get the right advice under one roof."

"For now, we plan to open this clinic only at KEM Hospital, but, in the future, we will extend the service in Sion and Nair hospitals as well. This will be a first-of-a-kind clinic in a BMC-run hospital."

Article-Major Congenital Anomaly Risk Down for Older Moms

(HealthDay News) — Advanced maternal age is associated with decreased risk for major fetal congenital anomalies, according to a study presented at the annual meeting of the Society for Maternal-Fetal Medicine, held from February 3–8 in New Orleans  See More>>>

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.