MEET OUR VOLUNTEERS - Marie Marchesseault

Marie Marchesseault Marie Marchesseault is the mother of Anna, who was diagnosed with right-sided CDH in-utero after an ultrasound was done and more tests were performed, just to make sure everything was okay.  After the diagnosis, Marie and her husband Bob were given the option to terminate the pregnancy by the hospital, but they chose not to, due to their personal faith.  Anna was born by a scheduled c-section on November 29, 2001 and had a successful diaphragm repair at 5 days.  She went on ECMO for 4 weeks and was in the NICU for a total of two months until she was discharged.  Anna was an unusually happy baby in the NICU due to the family support and wonderful care of the MGH staff.  Although she did not have any other major complications, she was in and out of the hospital about once per year for about 6 years for respiratory related issues.  She was back in the hospital two times in 2012 but is generally an overall healthy child.   Marie’s husband Bob, their son, Benjamin, born in 1998, and their vizsla, Sammi, have been an integral part of managing Anna’s care and well-being.  Marie has a BSEE from Duke University and they are members of First Baptist Church in Reading, MA.  Because of the amazing support of her employer, she was able to take maternity leave when Anna was born and worked part-time for many years.  She currently works full-time in the telecommunications industry and is the CHERUBS co-State Representative of MA.

MEET OUR VOLUNTEERS - Chris Weaver

Chris Weaver I am a mother of 4, 1 angel born sleeping, 2 girls and one boy.  I am also a grandmother of 3, 2 grandsons and 1 granddaughter. Born and raised in Boston suburb and moved to West Michigan in 2007.  I have two grandchildren with rare diagnosis of genetic disorders.  Matteo who is 3 1/2 was diagnosed at birth with hirschsprungs disease, which affects the colon.  He had a repair surgery at 3 weeks old.  Nevaeh, my granddaughter, who is the reason I became a member of CHERUBS in 2009, was diagnosed at 17 weeks gestation with LCDH.  I count my blessings each day as I have been told that it is very rare to have 2 different genetic diseases in the same family as we have.  We are lucky that both children have had corrective surgery and at this time doing well.

Boston Parade of Cherubs on April 19th!

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Boston Parade

    On Facebook - https://www.facebook.com/events/429436317126141/
    Register on Eventbrite - http://cdhawarenessday-2013boston.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to the CDH Genetic Study Program at Mass General
    Contact Tracy & Marie with any questions about this event at massachusetts@cherubs-cdh.org

MEET OUR VOLUNTEERS - Jade Hunt

Jade Hunt My name is Jade Hunt. I reside in Addison, VT and am the VT Representative for CHERUBS. My son, Liam Anthony Hunt, was born on May 22, 2011 in Middlebury, VT with a previously undiagnosed right CDH. Liam was airlifted to Dartmouth Hitchcock Medical Center in Lebanon, NH for stabilization and then transported to Children’s Hospital Boston in Boston, MA. Liam underwent two rounds of ECMO intervention. Shortly after coming off ECMO the second time, Liam developed acute tracheitis from lengthy intubation. On June 25, 2011, Liam earned his Angel Wings. I am also the proud mother of Landon Robert Hunt, age 3, and the wife to my sons’ wonderful father, Dustin Hunt.

April 19, 2013 CDH Awareness Day Proclamation - Boston, MA

Boston, Massachusetts proclaims April 19, 2013 for CDH Awareness thanks to the efforts of the Landers family!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

Great CDH T-Shirt Sale of 2013! Raise CDH Awareness on April 19th

2013 CDH Awareness Shirts ready to order!!!

https://www.firstgiving.com/10125/cdhawarenessday2013

50% of funds raised go to CHERUBS, 50% to CDH Research at hospitals (you pick a hospital by choosing a "Parade Team" on the link above).

Click on JOIN NOW to get started! Shirts are listed at the bottom.


Adult Shirts - $20.00
Child Shirst - $15.00

You can also sponsor a Parade have your company's name / logo or your cherub's photo / name on shirt worn around the world! Check out the Sponsorships available by clicking JOIN NOW.

You can also register for parades here and set up a page in honor/memory of your cherub!

Orders must be received by March 31st to receive by April 19th.


Companies and Families are invited to sponsor our 2013 Parades of Cherubs. 

Blue Sponsorship Tax-deductible sponsorship includes your large size company logo or  child's photo on national event literature and shirts	$5000.00
Pink Sponsorship Tax-deductible sponsorship includes your medium size company logo                 or child's photo on national event literature and shirts	$1000.00
Yellow Sponsorship Tax-deductible sponsorship includes your company name or child's  name on national event literature and shirts	$500.00
White Sponsorship Tax-deductible sponsorship includes your company name or child's  name on national event literature and shirts in small text.	$100.00

Click on JOIN NOW to get started on a sponsorship.  E-mail us at events@cdhsupport.org with any questions and with your logo.

Back of Shirt

Sponsor Logo / Photo Sizes

Front of Shirt

Shirt designs are subject to change before March 31

CHERUBS reserves the right to refuse inappropriate sponsorships if necessary.

CHERUBS In The Boston Marathon

A HUGE thank you to Bonnie Johnson for representing CHERUBS in the 2012 Boston Marathon in memory of Brielle Santo!

Please go support her!  We would love to have a cheering section for her there in Boston!  :)


http://www.crowdrise.com/Bostoncherubs

HERE'S THE STORY:


Hi my name is Bonnie! I had recently set a goal to qualify and run in the Boston Marathon. Now that I have qualified & got in,  I have decided to run for a cause. One that is very close to my family and heart.

Let me tell you about my great niece Brielle Theresa Santo born June 9th, 2010 to Frank & Carol Santo .  She was born with Congenital Diaphragmatic Hernia.   Brielle was on this earth for 16 days and  we give  thanks to God for those 16 days with her family. She will be forever in our hearts.   Before Brielles' birth, we have never heard of this condition which has taken so many babies lives. So now I am running not only to raise awareness but to raise funds for research through The Cherubs Organization.

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Won't you please join me? No amount is too small!

Upcoming Events at CHERUBS

Upcoming CDH Events & Fundraisers:

Event	Date
USA CDH HOPE Totebag Drive	Now - April 19th
UK CDH HOPE Totebag Drive	Now - April 19th
Racing for Eli in Wilmington, NC	March 17, 2012
Great Human Race in Durham, NC	March 24, 2012
Virginia Fox Hunt Fundraiser	March 31, 2012
CHERUBS in the Boston Marathon	April 16, 2012
International CDH Awareness Daily Celebration	April 19, 2012
Washington DC Parade of Cherubs	April 19, 2012
St. Louis, MO Parade of Cherubs	April 19, 2012
Chicago, IL Parade of Cherubs	April 19, 2012
Denver, CO Parade of Cherubs	April 19, 2012
UK Light Up the Night CDH Awareness Event	April 19, 2012
Virtual Parade of Cherubs	April 19, 2012
(TENTATIVE) Boston, MA Parade of Cherubs	April 19, 2012
(TENTATIVE) Gainesville, FL Parade of Cherubs	April 19, 2012
Peoria, IL Parade of Cherubs	April 22, 2012
Pennsylvania Member Picnic	June, 2012
Mount Snowden Climb	June 30, 2012
2012 International CDH Conference in San Francisco, CA	July 26-29, 2012
Ohio Member Picnic	August, 2012
CDH Car Show in Granite Hills, IL	August 11, 2012
Masquerading Angel Ball in Raleigh, NC	October 20, 2012
The Charley Stanfield-Maher Ball in the UK	October, 2012
Trick or Treat for CHERUBS - global	October 31, 2012
Christmas with Kasey in Aurora, CO	November, 2012
CHERUBS Holiday Vendor Show in Wake Forest, NC	November, 2012
Raleigh Christmas Parade in Raleigh, NC	November, 2012
CHERUBS Holiday Ebay Auction on-line	November 20, 2012
CDH Ornaments Sale	Nov - Dec, 2012
National Children's Memorial Day	December, 2012
Save the Cherubs	2012

E-mail us at events@cdhsupport.org to add your CHERUBS, Hospital or Family CDH event.

Is CDH Genetic? - Guest Speaker Meaghan Russell, MPH, PhD

Meet our guest speaker...

Meaghan Russell, MPH, PhD
Pediatric Surgical Research Laboratories
MassGeneral Hospital for Children

Click here to go to the CDH Q&A on Genetics!

----------------------------------------------------------------------

Because there is a massive amount of misinformation and inaccurate medical advice being posted lately on Facebook on different pages and groups and many parents seem confused about CDH and genetics and the possible causes of Congenital Diaphragmatic Hernia we have asked geneticist and CDH expert, Meaghan Russell, to guestspeak here on our Facebook page to answer any questions that you may have about possible causes, current research, familial CDH, etc.

Please post your questions as comments to this note and she will answer as her schedule allows. 

*** Please note that Meaghan cannot give medical advice or diagnosis your cherub via the internet! ***


 
Meaghan Russell and Mauro Longoni at the 2011 CDH Conference


----------------------------------------------------------------------

View videos from Meaghan's lectures at the CDH conference at http://www.cdhconference.org or http://www.youtube.com/cdhsupport

----------------------------------------------------------------------


FROM PNAS- http://www.pnas.org/content/109/8/2978.full

"Congenital diaphragmatic hernia candidate genes
derived from embryonic transcriptomes"

Congenital diaphragmatic hernia (CDH) is a common (1 in 3,000 live
births) major congenital malformation that results in significant
morbidity and mortality. The discovery of CDH loci using standard
genetic approaches has been hindered by its genetic heterogeneity.
We hypothesized that gene expression profiling of developing
embryonic diaphragms would help identify genes likely to be
associated with diaphragm defects. We generated a time series of
whole-transcriptome expression profiles from laser captured em-
bryonic mouse diaphragms at embryonic day (E)11.5 and E12.5
when experimental perturbations lead to CDH phenotypes, and
E16.5 when the diaphragm is fully formed. Gene sets defining
biologically relevant pathways and temporal expression trends
were identified by using a series of bioinformatic algorithms. These
developmental sets were then compared with a manually curated
list of genes previously shown to cause diaphragm defects in
humans and in mouse models. Our integrative filtering strategy
identified 27 candidates for CDH. We examined the diaphragms of
knockout mice for one of the candidate genes, pre–B-cell leukemia
transcription factor 1 (Pbx1), and identified a range of previously
undetected diaphragmatic defects. Our study demonstrates the
utility of genetic characterization of normal development as an in-
tegral part of a disease gene identification and prioritization strat-
egy for CDH, an approach that can be extended to other diseases
and developmental anomalies.

Click here to go to the CDH Q&A on Genetics!

Gabe's Bowl-A-Thon

(From Corin)

The Bowl-A-Thon fundraising event was a huge success! We had over 50 people in attendance, including 6 CHERUBS families and 3 beautiful cherubs themselves! We succeeded in beating our fundraising goal, but best of all were able to have fun and spread some CDH Awareness to the local bowlers. The staff were very interested in what we were raising money for, and asked us to come back next year to make it an annual event

A big thank you to all who participated and to all those who sponsored the event!

For more information and photos, visit the New England CHERUBS blog at http://newenglandcherubs.wordpress.com/