We just uploaded the latest issue of CHERUBS newsletter -

http://www.cdhsupport.org/newsletter/Winter09SilverLining.pdf

This fall, the family and friends of sweet little cherub, Faith Grace Miles, held a blood drive and balloon release in her memory and to raise awareness. Faith's parents, Amy and Steve, have done so much in her memory in less than a year already... we know Faith is as proud of them as we are!

FINALLY, the calendar is up! Also, this weekend Cafepress has a free shipping sale going on!

http://www.cafepress.com/cherubs.337095355

"Do unto others as you would have them do unto you" - God

"Do unto others as you would have them do unto you" - so simple and so hard to do for some. If you want people to be kind to you - be kind to them. If you want people to like you - like them. If you don't want people to attack you - don't attack them. If you don't want people to prevent you from doing things - don't prevent them. If you don't want to be hit - don't strike at others. If you want people to share with you - share with them. If you want to be respected - respect others. These are all things most of us learn on the playground.

The Golden Rule.... what most Christians are supposed to live by. What most major religions also teach. It's so simple. Treat others how you would wish to be treated.

We believe that at CHERUBS and we try to live that. We work hard to try to "do unto others" as we wish others had done for us. This is so important in dealing with CDH.

CDH families need kindness - loving family and friends who are there for them in their darkest hours. Praying for them. Praying beside them. Giving them hope and encouraging miracles. Is that not how we would all wish to be treated during a time when we aren't sure if our baby will survive a cruel and devastating birth defect. People can say the cruelest things sometimes. Thoughtless words can hurt. CDH families need kindness. We all do.

CDH families need a helping hand - this can be physically, monetarily or through prayer. CDH can drain a family, emotionally and financially. Hopefully our healthcare system will find a way soon to provide free medical care to families - a lot of families will have to file bankruptcy or go on government healthcare to afford to pay their bills after CDH. Even if the healthcare is covered by insurance, losing time from work, travel expenses and incidentals can add up quickly. Bring them a meal to the hospital and save them the expenses of cafeteria food. Pay for parking passes - they add up quickly. Cover the cost of their Ronald McDonald House room - cheaper and more supportive of a hotel room. Hand them a gas card. Give them a card with cash to help them out. Offer to watch their other children or do something fun with them. Clean their home or do their grocery shopping. Help cover all the household duties and chores that have to be pushed to the side when dealing with CDH. You have no idea how 1 kind act can go so far - and isn't that how you would want to be treated?

CDH families need compassion - support in raising a special child or grieving their cherub. Be understanding when they can't take their child out in public for fear of germs. Don't get upset if they have a hard time being around pregnant women for a while. Call them to check on them. Learn about CDH. CDH families need to know you care. For those grieving families, know the cherub's birthday and heaven day and be supportive on those days. Visit the cemetery with them. Do things in memory of the cherub. It's so important for grieving families to know that other people remember their cherubs too. Isn't this how you would want people to be if you were in their shoes?

We have been giving this advice to family and friends for years. We've been printing lists of what you can do to help CDH families in our Parent Reference Guide since 1997. We get lots of e-mails and calls from grandparents or friends or fellow church members or co-workers all asking "what can we do?". We give them the lists but we also tell them "Treat them how you would want to be treated if you were in their shoes".

That's not just a quote at CHERUBS - it's what we live by and work by. It's what every CDH family needs.

Update:

On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other CDH organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness”.

On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.

It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.

http://ttabvue.uspto.gov/ttabvue/ttabvue-92050284-CAN-1.pdf

http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2

Petition against the "Congenital Diaphragmatic Hernia Awareness" Trademark is located at http://www.ipetitions.com/petition/cdhawareness/index.html

Because of the legal and ethical issues behind "Congenital Diaphragmatic Hernia Awareness Day" and the fact that proclamations gathered by CDH families for this day were used in the registering of the "Congenital Diaphragmatic Hernia Awareness" trademark, CHERUBS gracefully chooses to decline to support this event.

http://www.ipetitions.com/petition/cdhawareness/

We respect the rights of our members and all CDH families to celebrate CDH Awareness on March 31 but in good conscience, we can not support this event or the organizations behind it.

Instead, CHERUBS chooses to support CDH families and awareness every day, by everyone. Freely. CHERUBS wishes to support the organizations and families who work hard, all year round, to stand up for our children and make sure that their rights and their memories are respected:

CHERUBS Australia
CHERUBS UK
Kays Kids
Jack Ryan Gillham Foundation
Little Lambs
Olivia Raine Foundation
Rainbow of Hope
CHERUBS

Let's all show our support of these babies and the organizations and medical care providers who work hard to protect them and help them all year round.

Just a few of the events coming up at CHERUBS!


February, 2009

Valentine's Day Cherubs Fundraiser - February 14, 2009 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


March, 2009

Texas Bake Sale - Corpus Cristi, TX. You can reach Melissa at 361-288-4698
CHERUBS Ebay Auctions - around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


April, 2009

CHERUBS International CDH Awareness Balloon Release & Candlelighting Event
Michigan JayCee's Event


May, 2009

Michigan Member Bowl-a-Thon - in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480
North Carolina Walk for Cherubs - in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129
Churches for Cherubs Event - around the world! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


June, 2009

2009 UK Conference - in Great Britain. You can reach Brenda at blane@cherubs-cdh.org or 0800 731 6991
Pennsylvania Get-Together - You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073


July, 2009

2009 International Member Conference - in Texas! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


August, 2009

Ohio Get-Together - in Columbus, OH. You can reach Tara at thall@cherubs-cdh.org or 614-275-0858


September, 2009

Jeremiah’s Car Show - in Columbus, Ohio. You can reach Sarah at sdeskins@cherubs-cdh.org or 419-512-3446


October, 2009

2009 Australia Conference - in Australia. You can reach Danielle at dkessner@cherubs-cdh.org or 03 5135 6999
New England Get-Together - in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182
Gabe’s Bowl-a-Thon - in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182
CHERUBS Masquerade Angel Ball - October 30, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


December, 2009

National Children’s Memorial Day - December 13, 2009 at 7:00 pm around the world
New England Truffle Sale - in Rhode Island. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182


January, 2010

Shannon Crawford CDH Spaghetti Dinner - January 16, 2010 in Elizabeth, Pennsylvania. You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073
Blood Drive in Memory of Shane Torrence - January 28, 2010 in Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


February, 2010

Valentine's Day Cherubs Fundraiser - February 14, 2010 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


April, 2010

CHERUBS Golf Tournament - Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


July, 2010

2010 International Member Conference in San Francisco, California. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


October, 2010

CHERUBS Masquerade Angel Ball - October 29, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


If you would like to add an event, please let us know! events@cherubs-cdh.org

Once upon a time, CHERUBS used to be able to afford to send out new member packets and items for new and expectant parents. We haven't been able to afford to do so for the past few years unfortunately due to lack of donations and a membership that has grown wildly. But our New England members have started offering this service again to new and expectant members up north and we are thrilled and proud of what they are doing and hope to offer it across the U.S. again soon!

(from Corin)

Gabriel's Gifts is a project we started to provide new and expectant parents of CDH babies with gift bags. We all know how difficult it is to have a child with CDH living in the NICU fighting for life, and hope that these bags will bring a little comfort to those families.

In these bags we hope to include items such as a baby blanket/quilt, eye cover, hat, booties, journal, pens, disposable camera, childrens book, lip balm, CDH information packet, gift cards, and any other comfort items that may be helpful.

We are in desperate need of donations to put these bags together. For $20 you can sponsor a gift bag that will help a family in need. In exchange for your sponsorship we will include your cherubs story in the sponsored bag. We also would greatly appreciate in-kind donations of any of the above items. If you would like to donate some items or would like to sponsor a gift bag in honor/memory of your cherub please contact Corin at cnava@cherubs-cdh.org.

(from Corin)

This years holiday truffle sale went very well! We sold boxes and platters of truffles in a variety of flavors including banana, coconut, orange creamsicle, peanut butter, mocha, double chocolate, raspberry, key lime, and Andes mint. We sold over 2200 truffles this year to raise money for the Gabriel’s Gift Bag project. Thanks to everyone who helped us sell them, we raised enough money to fill 50 bags!

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

(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/

Several of our CDH families met up for a weekend of camping in Pennyslvania! If you are interested in the next camping expedition, contact our PA State Representative, Kate, at kcrawford@cherubs-cdh.org

Above are photos from Jeremiah's car show for CDH. Saturday September 20th 2008 in Ashley, Ohio.

We raised $830 total through open donations to register cars and several raffles. The main raffle being a fully restored 1940 pedal car, compliments of Jeremiah's Uncle Bryon and family friend Bud Lemley. The parts to the car were donated to us by Tom and Sindy Kohler of Cardington. We also had birthday cake for Jeremiah and a balloon launch. Proceeds were split between CHERUBS and Nationwide Children's Hospital's J4 NICU.

Sarah Deskins - sdeskins@cherubs-cdh.org
Ohio State Representative & Jeremiah’s Mom

Photos from our 2008 CHERUBS Ohio Picnic!

Every year since 1997 CHERUBS members have participated in National Children's Memorial Day. This was started by Compassionate Friends in remembrance of all children lost. This includes children of all ages, including those not yet born, and includes children lost from all diseases, birth defects, accidents, murders, suicides - ALL children. Because we have several cherubs who were lost over 1 yr old, the Pregnancy and Infant Loss Day didn't encompass all of our cherubs - National Children's Memorial Day does. It also allow grieving parents to meet with other local grieving parents in their areas. This event occurs every year on the 2nd Sunday of December and proclamations by the Senate and President are signed. Proclamations are also signed by other heads of state around the world.

Each year, most of our grieving families light candles at 7:00 pm - with each time zone this creates a continuous light around the world for 24 hours. Many of us light candles for our cherubs and for other cherubs as well. I invite ALL members to participate this year. This includes those of you who still have your cherubs - please light a candle for those cherubs lost, in honor of your miracle and blessing of still having your cherub here.

Some of you may know, I have had many miscarriages. I light candles for those babies as well and light candles for many cherubs. I started doing this in 1997 and in 1999 I had to add a candle for Shane. That first year his candle (a tealight) caught my coffee table on fire. 20-something candles on the table for my babies and many cherubs and his somehow got the polyurethane so hot that it burnt a hole in my antique table. I still used that table until last month when I got married and didn't have room for it - I smiled every time I saw that burn mark - like Shane was sending me a sign that he was there. Because the 2 years before, he had been, watching the flames on the candles as his dad and I said prayers for the children lost. And saying prayers for how thankful we were to have him still here. This is why I ask of all you to participate - in joy for our cherubs still here and in memory for those who are not.

Some other things we can do to also raise awareness.... wear CDH Awareness clothing. It doesn't matter what group it's from, what color the ribbon is... just raise awareness. Our Texas members had group candle lighting ceremonies for 2 years. I help a group candle lighting in NC for all local grieving parents (not just CDH) one year. Churches will often include information in their services and programs if you ask. Many churches will let you hold candle lighting ceremonies as well. During the day you could organize a balloon release with the children's names on the balloons (florists will often donate them). Local newspapers usually welcome stories on NCMD and the events held locally. This is a great way to raise awareness of NCMD and CDH. Or you can just gather your family in your home and light candles and say prayers at 7:00.

The week before NCMD, our site will change to black and white and there will be a listing of all the 100's of babies lost to CDH on our homepage, with a candle by each of their names (make sure you check the box to give publishing permission on your Profile so your cherub is included if your cherub has wings). This will stay up for 1 week and it will be a very solemn reminder of just how many cherubs are lost - scrolling and scrolling through a list of names of victims to CDH is heartbreaking when you think of all the families of all these children. We do this out of respect for our grieving families, those who will not get to buy toys for their cherubs this Christmas or watch them build snowmen or celebrate New Year's.

The point of all we are doing for NCMD, of all of this, is let us all participate this year and remember why we are all here - to help CDH families and to try to stop the loss of more babies to CDH.

If you would like to hold a local event, please let us know.

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

I FINALLY finished all these projects, woohoo! A HUGE thank you to our amazing volunteers who collected over 250 recipes!! And an emormous thank you to the parents who wrote and submitted stories of their children affected by CDH.

If you haven't taken a look at our on-line photograph albums, they are worth the visit. We have over 2500 CDH families at CHERUBS and over 500 of them have uploaded their children's photographs. These pictures are a good representation of all the faces of Congenital Diaphragmatic Hernia and how completely "normal" these kids look.... you could very well pass a cherub on the street and never know it.

Cherubs Without Wings Album (Survivors) - http://www.cdhsupport.org/members/album_cat.php?cat_id=2

Cherubs With Wings Album (Non-Survivors) - http://www.cdhsupport.org/members/album_cat.php?cat_id=3

If you would like to include your cherub's photo, please log on to our site and add your picture to the appropriate album. Our 2008 Cherubs Yearbook will be put together soon and our 2009 CDH Cherubs Calendar will be ready by next week so make sure to add your photo by Wednesday to be included!

"Stories of Cherubs" Vol. II will be out this weekend! Last minute submissions are being accepted until Wednesday. If you aren't sure if your story will be included, you can check over on our forums for the list of stories that we have received. http://www.cdhsupport.org/members/viewtopic.php?p=34480#34480




Below is a list of the stories that were included in "Stories of Cherubs" Vol. I, which is still on sale at cafepress! http://www.cafepress.com/cherubs.91971767

Aileen Iris Adame
Ashley Kaitlyn Abel
Logan Andrew Alexanderauge Michael Allen
Cloudey Rae Anders
David Valera Angil
Faith Marie Atkins
Nathan Presley Bacon
Joshua Bruce Baker
Nathan Balistreri
Chloe Gabrielle Barbee
Jack Barkley
Angela Barricklow
Joshua Bazian
Dominick Aaron Beach
Spencer James Bean
Chella Jane Bell
Kaylee Lynn Bentz
Jaila Berrios
Caitlin L. Blair
Joel Archie Jed Abel Blakley
James Zachary Blaylock
Kailyn Brooke Bost
Amanda Bracher
Madeline Hope Bracken
Alyssa Nicole Bradshaw
Tara'mais J. L. Brown
Anneliese Mae Browning
Tyler Bruce
Nicholas Michael Brucher
Patrick Neil Bryant
Becky Buist
Ian Raymond Bunch
Michelle Button
Corkins Cadence Skyer
Nicholas Calandro
Brady Joseph Campbell
Tyrell James Campbell
James Chalk
Matthew Cheffer
Richard Cheslock
Elizia Chicoine
Kayla Mae Michele Childress
Alisha Lemuela Chiteme
Emily Nicole Clark
Jamie Clarke
Nathan Theo Clarke
Matthew Clemens
Trinity Ann Coleman
Daniel Collett-Arquelles
Peter Compa
Tyler Conry
Troy Coon
Taylor Saige Cooper
Finn Soloman Cowan
Dallas Cox
Angelia Crawford
Carly Cribben
Dylan Crisorio-Rivera
Jacob Michael Crowley
Abigail Faith Curtis
Hope Dangerfield
Tristan Dean
Brian Decker
Sara DeHart
Noelle Deneault
Kelly Dickerson Wright
Sydney DiMaria
Bryan Shawn Doan
Jesse James Drugmand
Adrienne Dale Dumas
Amanda Leigh Durbin
Jeffery Ronald Durrigan
Joshua Liam Siddhattha Eck
Cody Edwards
Cole Benton Edwards
Reese Gabrielle Eisele-Elizondo
Shelton Earl Evans
Emma Fahey
Joey Falasca
Henry James Faure
Tysen Rick Fausett
Sean Feaster
Tyler Anthony Finley
McKynna Lorraine Fisher
Benjamin Fleming
Michael Christian Fogelgren
Candis Nakole Forman
Sean Patrick Forney
Dylan Richard Forsythe
Thomas Alexander Frietag
Anna Fuss
Emma Elizabeth Gallagher
Christopher Michael Garner II
Steven Tyler Gartman
Hayley Chantelle Ginns
Matthew Goembel
Nadia Gould
Kirra Graham
Kaleb Matthew Groce
Tyler Grubb
Aimee & Cameron Bellas Haas
Shana Kay Hagood
Joseph Michael Hales
Brandon James Hall
John Michael Hall
Taylor-Lynn Faith Halter
Zarek Ryan Halterman
Colin Raymond Hambel
Coleman Allen Hamilton
Blake Hanlon
Zachary Keith Harris
Sarah Harrison
Sean Allen Heiting
Jacob Nelson Henze
Rebecca Breana Higgins
Molly & Megan Hirst
Jack Hockenyos
Karson Hocker
Rebecca Christine Hodson
Aaron Jacob Hoewing
Tierney Elizabeth Hohman
Brian Holsworth
Hannah Elizabeth Horn
Mattson Edward Houghton
Samantha Marie Hudson
Elizabeth Joy Huffman
Belle Kathleen Hutto
Anthony Urban Iacobucci
Joshua Evan Interiano
Isaac Jackson
Bradley James Makanaokalani Jacobs
Hayley Jarrett
Derek Jarvis
Bethany Michelle Jenkins
Gregory Joseph Jennings
Alexandria Katelyn Job
Matthew Ryan Johnson
Joseph Mackenzie Kelley
Joshua Kelly
Lewis Kelly
Madison Elizabeth Kelsay
Cameron Anthony Kennell
Alyssa Catherine Kessner
Samuel Kincade
Ariana Kjaersgaard
Clara Knapton
William James Kowalski
Sara Hope Lamkin
Jessica Lander
Brittney Landry
Alysha Rhiannon Lane
Charley Langford
Mathias Jacob Lehmann
Cody Michael Ragland Lenhart
Darragh Lennon
Sarah Christina Lewis
Aidan Gustavo Liebe
Jane Elin Lockhart
Joe Longman
Danny Lord
Natalie Lund
Sean Matthew Lutz
Cody Albert John Maerten
Blake Massie
Sydney Olivia Matthews
Jacob Aaron Matulevich
Madeline Adell May
Caleb McAndrew
Joshua Cameron McCarty
Fallon Jessica McClelland
Lily Grace McDonald
Connor Ellis McLuckie
Fletcher David McNeil
Margret Faith McSwain
Blake John Merrick
Abigail Metty
Ashley Meyers
Melissa Michalski
Alexyss Jean-Elizabeth Miller
Megan Renee Miller
Kristin Marie Moats
Oscar Moffet
Preston Carr Montague
Avery Michelle Morgan
Kevin Russell Morgan Jr.
Jodi Marie Morrison
Spencer Andrew Morton
Brandon Motley
Alex Mourtsen
Ryan Matthew Mudderman
Owen Mulak-MacPhee
Michaela Munson
Anugrah Murali
Connor Alexander Myers
Naomi Nagurski
Benjamin Liam Newby
Luke Nowakowski
Ashley Nugent
Clare O'Connor
Jonathan O'Malley
Tyler James Oosterhoff
Emily Frances O'Reilly
Riley Tucker Padgett
Caden Andrew Parker
Jak Parsons
Isaac Conner Pedler
Matthew Ryan Peterson
Jonah Michael Phares
Anna K. Piasecki
Rex Piner
Aiden Plaisted
Dante Polito
Max Robert Porter
Sydney Price
Cole Robert Pulse
Jacob Pulse
Benjamin Michael Pytyck
Jonathan Luke Rademaker
Angela Reedell
Candace Reeves
Rebecca Jade Reid
Dominic Joseph Reitz
Samuel Lee Retterer
Caleb Michael Rhodes
Andrew Christian Riley
Brianna Mary Roberts
Logan James Roberts
Rhian Robilliard
Ian Riley Robinson
Wesley Alexander Robinson-Derrick
Christopher William Rodriguez
Hailey Elizabeth Rogula
Brayden William Ross
Brook Sue Rupe
Abby Elizabeth Russell
Bennett Rezsö Russell
Madeline Jo Rutheford
Juan Heinrick Sampedro
Collins Sarah Violet
Thomas Sawyer
Colton Saylor
Briana Schafer
Harlee James Scherrenberg Timms
Eric Christopher Schmitt
Madison Lillian Schultz
Hope Natasha Scott
Maresa Serra
Parker Daniel Setliff
Luke Stephen Shooter
Harry Simpson
Trent Montgomery Sincavage
Amanda Brianne Slavin
Nicholas Brian Slavin
Cherylynn Renee' Smith
Mathew Smith
Rhiannon Lea Smith
Richard Carl Snow
Laura Beth Snyder
Jaret Paul Spelich
Aaron Spencer
Makenzee Spencer
Casey Richard Starks
Connor Ryan Stevenson
Kaylyn Stiner
Karina Strong
Haley Elizabeth Sum
Emily Ruth Surgis
Alisha Faith Swartz
Cadwell Tanina
Mersayd Margaret Taylor
Jaqueline Taylor-Jackson
Garreth Mervy Thomas
John Lee Thompson
Ryan Treasure Thompson
Stephanie Ann Thompson
Anna Tijan
Jeremy Shane Torrence
Christopher Michael Toth
Jessica Mary Tucker
Ryan Michael VanderSchaaf
Quinn Michael Verdin
Alexander Lee Vise
Bailey Cameron Viset
Lisa Warnock
Zachary Wasik
Cameron Dianne Watson
Callum Weber
Joshua Weber
Brandon Weborg
Shae Ashley Webster
Allison Brooke Weldon
Emma Margaret West
Kara Westover
Sherry Wheeler Wheeler-Macormic
Natalie Dianne Whittle
Samuel Austin Wiggs
Ashton Lee Williams
Nathan Hunter Wilson
Corey Woodring
Max Wyatt
Katie Elizabeth Yerger
Janessa Opal Margaret Young
Avery Mae Ziebert
Aagje, Babette and Suze Zwart

S. 1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810

Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning - Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn't it wonderful that it has finally been passed!?





Summary from the site:

10/8/2008--Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act -
Section 3 -

Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.

History of Congenital Diaphragmatic Hernia

- Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.

- In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.

- In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.

- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first succesful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specificially for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.

- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.

- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

- Is has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A Vitamin A diet deficiency is known to cause CDH is lab rats.

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid


In CHERUBS Membership:

- CDH has both occurred and not occurred in identical twins.

- We have many set of fraternal twins with one baby with CDH and the other healthy

- 3 families out of 2500 have had 3 children each with CDH. The reoccurance rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%

- Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.

- 3 of our members, all male, have had 6 CDH repairs each.

- CDH has been diagnosed in utero as early as 10 weeks for several of our members.

- Many of our adult survivors have gone on to have healthy babies and pregnancies of their own. Only 2 families have both a parent and a child born with CDH.

- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.

10/30/08 - http://cdhsupport.blogspot.com/2008/10/our-advisors.html

I'd like to take a few minutes to introduce our Board. Because I do the blog postings and the office work, people mistake me as the "face behind CHERUBS"..... which is so untrue. I am one of many who make our wonderful organization run. We have the most amazing volunteers and I will be writing about them as well soon, and also adding stories and videos of members too. But for right now, I'd like you all to meet some very special people:

Parent Advisors
(in no particular order)

Judi Toth - mom of cherub with wings, Christopher Michael Toth, Judi has been a member of CHERUBS for 11 years. She was our Secretary for several years until her work and health didn't allow for volunteering as many hours as she was. Judi has spent 1000's of hours volunteering over the years, from helping to create our database to planning events in Washington DC for us, she has been invaluable to CHERUBS. Even through 9/11 when she was in the Pentagon as it was hit, she still called us to let us know she was ok and to check on other members. She often calls CHERUBS her "second baby" and she means it sincerely. When Shane died Judi stepped in and handled all of CHERUBS affairs so that I could have time to grieve my son without worrying about our organization. She also helped plan his funeral and held my hand those days following his death. That is the type of person that Judi is and I know she makes Christopher proud.

Tara Hall - mom of cherub on earth, Brandon Hall, who has taught us all a lot about feeding issues and reherniations. Tara is also our Ohio State Representative and has planned 10 years of Ohio picnics very successfully. Always ready to lend an ear or offer encouragement, Tara has been a shoulder for 100's of CDH families. When my son died Tara immediately hopped into her car and drove from Ohio to North Carolina without any hesitation, no matter that long drive or how emotionally hard it must have been for her. Tara has the highest of integrity and has been a constant source of inspiration and support to me and so many other CDH families.

Stephanie Olivarez - mom of adorable Shelby Olivarez, Stephanie joined CHERUBS just last year but within weeks stepped up to volunteer and she has become such a huge part of all we do at CHERUBS we don't even remember what it was like without her! Stephanie and her husband, Shane, held an ATV Rally in Indiana in honor of Shelby and CHERUBS and did a phenomenal job of raising CDH Awareness. Steph is our Indiana State Representative as well as our Volunteer Coordinator for State and International Reps. She also stepped up to help plan the 2008 CDH Conference and Angel Ball and without her, neither event would've been possible. She does all this, raises 4 beautiful little girls, and still keeps up with all our members offering them prayers and encouragement. Stephanie is family now and stuck with us CHERUBS members forever. :)

Barbara Wagner - mom to Logan Wagner, a teenager now.... wow! Where has the time gone? Barb has been a member for 10 yrs also I think and is such a huge help with CHERUBS I really don't know what I'd do without her! She's our Volunteer Coordinator for Committees and also holds almost every other volunteer position as well. Always cheerful, no matter what she has going on in her own life... Barb gives so much of herself to CHERUBS and CDH families. Calendars, cookbooks, anything creative.... she's our gal! She even gave me ideas for my wedding. Barb is the type of woman who makes a friend and they are like a sister to her.... we are so lucky to have her. She's our newest Advisor and we're glad to have her aboard!

Brenda Slavin - mom to cherubs with wings, Amanda and Nicholas Slavin. Brenda is the 3rd member of CHERUBS, joining us back in 1995. Mom to 2 babies lost to CDH and now a PICU nurse herself, Brenda offers a unique perspective that is so valuable to us. Also a newsletter contributor, Maryland State Representative, and conference speaker, Brenda is superwoman. She honors her babies memories, is single mom to 2 incredible kids on earth, works lots of hours helping the children in her PICU and their families and still has time for CHERUBS. Not to mention she's one heck of an amazing woman and friend. She's gotten me through grief of losing Shane, losing my sister and a divorce and kept me focused on CHERUBS.... she's done more for our organization than she knows and we love her for it.

Corin Nava -mom of cherub with wings, Gabriel Nava, Corin is easily summed up with one word - "sweetheart". Not that she's not a complicated and interesting lady but she has the sweetest personality and biggest heart and I can't imagine anyone meeting her and not immediately adoring her. She is on almost every committee, has several fundraisers throughout the year in New England for CHERUBS; whether it's baking 100's of truffles or bowling, or putting together 100's of information packets in Gabe's memory to donate to the local hospitals. The woman has energy - she does all this and has an infant, a husband, a job and she's State Representative for almost every New England state! Not to mention she's always offering encouragement and support to all the members and even offers baking advice. She's a saint... she may not agree with that statement but I still think it's true.

Darlene Silverman - grandmother to Emily. Darlene is our voice of reason and encouragement when things get rough. She's given me a virtual hug or swift kick when I need it. Her loyalty to CHERUBS and CDH families is amazing. Whether working all hours of the night with me on legal paperwork or research, she is such an amazing woman. She is the only Advisor that I haven't met in person yet and I can't wait to finally hug this woman! If it hadn't been for Darlene's constant support and encouragement, I really don't know how I would've made it through all the drama and attacks on CHERUBS in the past 2 years. No matter how discouraged I got, Darlene was right there reminding why we do what we do every day - for the cherubs and families. If there was information we needed for anything at all - she can find it. Darlene has been my guardian angel on earth and I so appreciate her and all she's done for our organization and my own sanity. :)

Elaine Moats - mom of Kristin Moats... a teenager who just got her driver's license. It still blows my mind to think she's old enough to drive now; she was so little when Elaine joined CHERUBS back in 1996 I think. Elaine... we jokingly call us "old-timers".... she's been a member of CHERUBS for almost as long as I have. Elaine has dedicated 1000's of hours to CHERUBS; all 3 cookbooks, State Representative for 4 midwest states, on almost every committee, writing 100's of letters for auctions... Elaine is just... wonderful. She is one of the calmest, most poised people I have ever met. She always knows what to say, always is quick to volunteer to help, has given so much support and encouragement to so many CDH families throughout the years. Not to mention that she's been such a source of support and encouragement to me throughout the years as well and her friendship means so much to me. I know a lot of other CDH families feel the same way.

Kara Hess - mom of Adam Hess, who is keeping his mom hopping lately and whom we hope feels better soon. Kara.... she's been an Advisor less than a year I think but she's made such an impact. Kara is so funny, so honest and blunt - and we need that! Not that we don't have Advisors who are also funny, honest and blunt... Kara is just a breath of fresh air, a new CDH mom to stir things up with all of us "old-timers". When I'm wrong, she tells me. When we throw out a bad idea, she let's us know. When one of us needs encouragement or some spiritual comfort - she's there, offering words or a laugh or a funny photo or scripture. She is such a good Christian.... one that I look up to and want to be more like. Married with 2 young boys, she has her hands full but still has time for all we have going on at CHERUBS and supporting members as well. Though Kara is a new Advisor and friend, she is a dear one... to so many of us.


Heidi Cadwell - mom to cherub on earth, Tanina Cadwell. Tanina... our walking miracle cherub... ok, all cherubs are walking miracles but Tanina is a walking miracle cherub who goes even farther than just being a "normal" kid - she's an extraordinary teenager achieving goals that would be hard for even adults to do. And a huge reason behind that is her amazing mom, Heidi. Heidi is another "old-timer", having joined us around 1998. Heidi has had more than her share of troubles the past few years but she takes on each challenge with such dignity and grace and determination.... it's so easy to see where Tanina gets all those amazing qualities (not that Frank isn't great too!). And through it all, Heidi has been there for CHERUBS. Sometimes not as much as she wants to be involved in things but we all know she's there, quietly encouraging us, silently praying for us and still wanting to help others. Heidi was a teacher for years, helping children to learn. A foster mom to so many kids, giving them a home and love. And she's held many volunteer positions at CHERUBS throughout the years as well. She has the biggest heart and cares so much for others.... the world would be a much better place if there were more Heidi Cadwell's in it.

Our amazing Advisors.... those behind the scenes with me helping to keep the organization going. Our members have no idea how much time and love they all donate to CDH families. How many hours they lose with their own cherubs and families to make sure that all CDH families have the information and support that they need. All volunteering - no one at CHERUBS is paid a salary. They all give of themselves because our cause is so important to them... and they so honor their cherubs' memorys and lives. I am so grateful to know each one of these wonderful women.

So how do you become an Advisor? Our Advisors were chosen many years ago when we needed them for updating our 501(c)III paperwork. Most of our Advisors have been on the Board since then, with a few additions that have been voted in in the past 2 years to shake up ideas a bit and we've only lost 3 Advisors in 14 years - all due to needing more time with their families and all 3 are welcome back on the committee at any time. All of them are very active in our organization as members and Advisors. They are all quick to help, respond and do what they can for CHERUBS and CDH families. We've been very lucky to have so many dedicated people who volunteer their time and hearts to CHERUBS and to families affected by Congenital Diaphragmatic Hernia.


Professional Advisors

Our Professional Advisors are equally amazing; caring for CDH babies and their families health and their rights. They have all given countless hours of advice, support, encouragement, referals, and been by our side for years - helping us to help CDH families. Without them, CHERUBS would not have come as far as we have. Their support for our organization and CDH families has been overwhelming and so appreciated over the years. They are the true fighters for CDH families and babies.

Lesli A. Taylor, MD
Vice-President
Professor Director, Division of Pediatric Surgery
East Tennessee State University

Rachel L. King, RN
Medical Advisor
Nurse Supervisor; Pediatric Intensive Care Unit
Duke University, Durham, North Carolina
Board Member

Vincent R. Adolph, MD
Medical Advisor
Department of Pediatric Surgery
Ochsner Clinic, New Orleans, Louisiana

Michael R. Harrison, MD
Medical Advisor
Professor of Surgery and Pediatrics
Director, Fetal Treatment Center
University of California, San Francisco

Aviva L. Katz, MD
Medical Advisor
Division of Pediatric Surgery
Alfred I. du Pont Institute, Philadelphia, Pennsylvania

Jacob C. Langer, MD, FRCS(C)
Medical Advisor
Chief, Pediatric General Surgery
Hospital for Sick Children, Toronto, Ontario, Canada

Cynthia M. Powell, M.D.
Medical Advisor
Assistant Professor of Pediatrics
Division of Genetics and Metabolism
University of North Carolina
Chapel Hill, North Carolina
Prem Puri, MS, FACS
Medical Advisor
Consultant Pediatric Surgeon
Children's Research Centre
Our Lady's Hospital for Sick Children
Crumlin, Dublin, Ireland

Jay Mark Wilson, MD
Medical Advisor
Assistant Professor of Surgery, Harvard Medical School
Associate in Surgery; Director, ECMO Program
Boston's Children's Hospital, Massachusetts

Claudine P. Torfs, PhD
Honorary Medical Advisor
Epidemiologist
California Birth Defects Monitoring Program
Betty Mekdeci
Professional Advisor
President & Founder
Birth Defect Research for Children
Celebration, Florida

M. Shane Perry
Attorney at Law
Legal Advisor
Morrisville, North Carolina