Lots of different fundraisers for CDH going on.... how many groups are doing "Change for CDH" around Halloween like the Trick-or-Treat for CDH stuff we've posted for years and the "Change for CDH" we posted about 2 months ago? And how many... groups are now doing totebags for the same CDH families? How do we collaborate it all instead of needless competition? That's a lot of the same services and ideas being done when we need so many other things for CDH families that aren't already being done.
Ideas? Suggestions?
The whole CDH community should be working as a team to provide the absolutely best and most original and different services for CDH families by using original and different ideas and fundraisers and sponsors.
There can never be enough CDH awareness, research or support for the half million families affected since 2000.
Some of the services, fundraisers and events offered -
Ideas? Suggestions? Please e-mail or PM any more suggestions that you think will help CDH families!!!! But please remember that, out of respect and professionalism:
- CHERUBS does not use ideas already done by other groups - CHERUBS does not infringe on copyrights and follows (supplemental) trademark laws - CHERUBS does not contact other groups' sponsors, donors or spokespeople - CHERUBS does not conduct the same fundraisers as other groups - CHERUBS does not like to waste money offering the same services other groups are already offering - CHERUBS has no paid employees - CHERUBS professional services are all pro-bono (lawyers, medical advisers, web design, etc) - CHERUBS does not receive grant funding - CHERUBS will not use ribbons or colors used by other causes - CHERUBS always offers original ideas and services that will benefit CDH parents - CHERUBS does not compete over members - CHERUBS makes every service, donation and purchase public for full disclosure of what we do and where donations go
And most importantly... CHERUBS remains ethical and works first and foremost with the entire CDH community and these babies at heart. We are not a "business", we are a charity. We do not participate, nor are we interested in, competition. Our focus is these children affected by CDH.
That said, we LOVE new ideas!!!!! But please respect other organizations, groups and causes as well. Our goal has always been for the entire CDH community to work together, with one focus.
We are asking EVERYONE on Facebook to please vote for CHERUBS to win this $50,000 marketing grant to raise awareness of CDH!!!!! For those of you on Facebook, please go to:
Please post on your profile and ask your FB friends to participate. There are not a whole lot of charities in this contest so if we all band together to get votes there is a great chance we'll win!
CHERUBS Advisory Committee has been working hard to come up with new paperwork to help prevent any more incidents and to protect the organization. Plus, it’s been about 10 years since we updated any of the paperwork so it was well overdue! When you have state and federal laws to follow and over 3000 people in our membership – we really needed more guidelines than our old short little 1 page list that too many found loopholes to abuse. The new rules will protect the organization and all of us personally. It was long, long overdue! The new documents are more detailed so everyone will be more on the same page.
We have a new set up and new paperwork and are starting over from scratch - that means all current volunteers are re-volunteering and new volunteers are filling out paperwork also. And we have A LOT of positions to fill!
We would really like to have 2 State & International Representatives (1 survivor, 1 non-survivor) for every state and country in our membership, all the committees filled and all the committees with leaders. Imagine all the incredible things we could do if we can do that! How wonderful it would be to have Reps in every state so that when a new family is diagnosed they have someone local to call who knows of other parents in their area.
Or if all of our committees were actively led and churning out 1 great service after another. CDH doesn't stand a chance against a group of busy and determined moms and dads standing together to help each other and fight this horrible birth defect and all it's effects on our children and families!
So please, each of you, take a look to see what each position does and let us know what we can sign you up for!!! Smile
* Your Name * Your Address * Your Phone Number * Your E-mail Address * Your Cherub's Name and Date(s) * Which volunteer positions would you like to volunteer for?
4. Read, print, sign and mail the following 3 documents back to our home office at
CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587 USA
CHERUBS, a local charity based here in the Triangle for almost 15 years is the world's oldest and largest organization for families affected by Congenital Diaphragmatic Hernia (CDH). CDH is a devastating birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs in the chest cavity and preventing lung growth. It is a fairly common birth defect, affecting 1 in every 2500 babies. 50% of babies born with CDH do not survive. Those that do survive often endure long hospital stays. The cause of CDH is not known.
"It's practically impossible to raise funds for a cause that almost no one's ever heard of" says President, Dawn Williamson who has been volunteering for CHERUBS since she founded it in 1995. "CDH is as common as Cystic Fibrosis and Spina Bifida and yet, we have no National Telethon, no Celebrity Spokesperson and unless you've been personally affected by you, you've probably never heard of it before now". Over a half million babies have been affected by CDH since 2000 - a half million babies! That's a horrendous number and the world needs to know this is happening so that more focus is put on research. But because the public has no idea what CDH is, asking for donations for it more often than not gets us odd looks rather than funds. And in this economy, it has made it even harder"
CHERUBS is an international organization that supports families, providing dozens of services that no other organization offers. With 3000 members and a shoe-string budget of only about $15,000 CHERUBS is run on a wing and prayer.
The Angel Ball began last year as a way to raise local awareness of CDH and raise money to fund the organization's services. It went beautifully last year with the community chipping in services such as event planning, auction services, food, photography and floral arrangements. Men arrived in tuxedos and women in white gowns, many wearing their wedding dresses again for the event. A local band and radio DJ were on hand to bring music and fun to the formal event as well. The organization raised $6000 dollars in it's first year through ticket sales, auction and raffle items. The response was so positive that already the event's web site is being inundated with ticket requests for this year's event. CHERUBS was expecting approximately 200 attendees at this year's event.
"We were hoping that we could raise $25,000 this year. We have had a lot of interest in ticket sales, just none in sponsorships. With our donations so low this year because of the economy, our hopes were that the Angel Ball would something that we could count on annually to help these families all year long. It's devastating and frustrating that we may have to cancel this event but without the $10,000 in sponsorship money that our event planners are requiring for event costs, we will have to cancel. At this point, the Angel Ball needs an angel to make it happen."
CDH Research is obviously needed and we've been talking about this for a while... I believe it was first bought up years and years ago here at CHERUBS. Time to get moving on that!
The anti-trademark bill would be called "Cherubs Law" for ALL babies affected by CDH. It would not only stop this trademark on CDH dead in it's tracks but it would protect all diseases, birth defects, issues, etc from ever having anyone try to own and profit off of awareness again. This would also save 2 years of legal work by our (pro bono) lawyers and the other party's legal bills - and put more focus by all groups involved where it should be instead of fighting this ridiculous trademark - helping families affected by CDH. But FYI - the trademark legal battle will wage on until "Congenital Diaphragmatic Hernia Awareness" is free to use and raise by anyone.
Both bills are PRO-ACTIVE ways to help CDH families and babies NOW. They are positive steps to major CDH research and to keep all awareness free. Sure, we could write other pieces of paper or raise some research money ourselves - but CDH affects 1000's of a babies every year - we can't wait any longer on abstract awareness bringing research money down the road possibly. Maybe. Some day. CDH needs research now and at CHERUBS we're already doing that research ourselves in the form of our studies and we're promoting the research of hospitals. But wouldn't it be wonderful if the government gave those researchers millions to research CDH right now?
Both bills will be a cinch to pass in Congress - how could they vote no to either? We just have to get them to Congress.
This is where we need your help. We need a Congressman / Congresswoman to submit the bill. With 3000 members, surely one of you has some Congressional connections that would greatly benefit the CDH community and these babies.
CHERUBS is proud to work with the hospitals participating in the International CDH Study Group and to share our research database findings so that together we can help find the cause, prevention and best treatments for CDH. Thank you to Drs. Kevin and Pam Lally for all of their support of CHERUBS and for all their dedication to families affected by CDH.
CHERUBS 2009 Conference ACDHO Attendees Dr. Daryl Scott (Baylor CDH Study), Dr. Kevin Lally, Dr. Pam Lally (CDH Study Group), Danielle Kessner (CHERUBS Australia), Brenda Lane (CHERUBS UK), Michelle Brown (Little Lambs), Kim Richards (Olivia Raine Foundation) and Dawn Williamson (CHERUBS). Not in the photograph but also in attendence were Dr. Meaghan Russell and Dr. Mauro Longoni (Boston CDH Study)
The following hospitals see many cases of CDH a year and participate in research with the International CDH Study Group. They do not respresent all hospital that work with CDH patients. This list should not be used to chose a particular hospital for your cherub.
Sydney Children’s Hospital - Randwick NWS Australia
Royal Children’s Hospital - Parkville Victoria Australia
University Hospital Gasthuisberg - B-3000 Leuven Belgium
Royal Alexandra Hospital - Edmonton Alberta Canada
The Hospital for Sick Children - Toronto Ontario Canada
We had someone helping to get new members registered and well, it's a mess. I've spent the last month trying to sort through and trying to make sure everyone can get onto the site and that all members have their usernames and password. We want ALL members to be able to log in! If you're having trouble getting into the forums, please e-mail us at login@cdhsupport.org and please include your name and your cherubs name. We will get back to ASAP with your login information. If you haven't registered (it's FREE at CHERUBS!), you can register here - http://cdhsupport.org/members/profile.php?mode=register
New Registration Agreement
We've been working on this list for over a month and finally it's done! Our forum software came with a very basic registration agreement that we thought would serve to keep all members behaving maturely and respectfully. But alas, we had to resort back to our old listserv rules and update them for our new forums. They do not include trademarks or copyrights or CHERUBS trying to control or own anything and they aren't full of legal mumbo jumbo protecting the rights of a "Company". They are simply about everyone behaving and treating each other with respect and keeping our forums a safe, positive place for CDH families. The rules are still easy to follow and written for everyone's safety and privacy. You can read them here - http://www.cdhsupport.org/members/viewtopic.php?t=3262&highlight=
All new members must agree to them before registering at CHERUBS and all old members must agree to them before logging into our forums.
CHERUBS Forums.
Below are just a few of the post topics in the last 2 weeks! CHERUBS has A LOT of information and support for families dealing with CDH - for ALL families dealing with CDH.
CHERUBS would like to welcome the families of the following cherubs who have joined our membership since May:
Edyn Grace Allinson Sofia Yvonne Alvarado-Ruiz Teresa Aragon Austin Badgley Anthony Joseph Barbieri Aneska Bothma Sunshine Boyd Riley Owen Brewer Finley George Burriss Keira Isabella Caudle Rhyan Andrew Charles Baby Chaudhari Baby Clarkson Kasey James Colvin Ashwini Crasto Charlie D'angelo Baby DePape Antony John Didone Matthew Frank Doerscheln Floyd Edward Dubois Robert Lee Dumford Keane Christian Edwards Nora El-Gamel Garrett Lee Ewers Bailey Matthew Ezernack Travis Lee Fenn Baby boy Ferraro Samuel Finzer John "Keoni" Nicholas Gonzalez-Rivera Aidan Dominic Hartley Brayden Jay Hawkes Quincy Thomas Haynes Shelby Hildreth Alex Hoang Andrew Hobbs Julia M Hoffman Megan Honeycutt Breanna Hosmer Sylvia Houselog Gabriel Aden Xavier Jackson Richard Keith Johnson Mohamed Ibrahim Kalmoush Chase Leroy Kelly Dallas Aiden Kislow Ryan Connor Krafft Leslie Nicole Lafon Cali Summer Lizarraga Dustin R Lockett Lozano Lozano Joshua Alonzo Lozano Kiyari Juliet Manriquez Armida Marqez Jake John Marshall Aniyah Renee Martinez Mia James Mccabe Lewis Moore Aaron Lee Murray James Thomas Naifeh Cody Ignacio Neil Nguyen Phuc Nguyen Kaden Bradley Oldham Jak Thomas roy Parsons-forshaw Savanna Rai Payne Barnaby George Peters Christian LeRoy Ray Kalliope Reynolds Anna Riccioluti Baby Richard Bryce Robinson Children Scott Baby Serna Chandler Reid Shannon Baby Sharp Madelyn Lilyanne Simonton Michael Jospeh Skaggs Scarlette Jayden Skrove Dakota Marie Tenney None Thanh Tam Bailey Jaycob Walters Nevaeh Nicole Weaver Johnson Maddox Malakai White Carlos Mikaere Wilkie Allie Kathryn Wilson Caleb Presley Winchester Lily Angel Winsell Zoey Anne Wood Spencer Allan Workman Noah William Workman Jacob Thomas Zimmerman
+ 25 other cherubs whose parents chose to not publish their names
Please keep all of these families in your prayers!
The following cherubs will grace us with their presence soon:
Edyn Grace Allinson Ireland Rose B. Alex Jayden Baker Sunshine Boyd Christan L Brownfield Baby Clarkson Baby DePape Matthew Frank Doerscheln Floyd Edward Dubois Robert Lee Dumford Andrew Hobbs Gabriel Aden Xavier Jackson Findlay Lucas Jordan Chase Leroy Kelly Grady Thomas King Leslie Nicole Lafon Joshua Alonzo Lozano Dawson Gabriel Martie Mia James Mccabe Jonathan Louis Moehl Baby Reynolds Baby Richard Baby Serna Scarlette Jayden Skrove Nevaeh Nicole Weaver Johnson Zoey Anne Wood Noah William Workman
+ 10 more whose parents chose not to publish their names
Please consider picking up some items to donate for our CHERUBS HOPE totebags for CDH parents.
Right now a lot of the office supplies stores have great sales on 1.5" view pocket white binders - we will be using them for our CDH Baby Books and need 250 of them for the next year. Some of the stores have HUGE discounts and buy 2, get 1 free deals. They have limits on how many yone person can purchase and we could really use help getting these!
Also, we are putting in the totebags small Kleenex packages, pens, 3 ring photo sheets and small bottles of hand-santizer and lotion - these are also sold at office supply and school supply stores.
Our annual Angel Ball will be held on October 30th in Durham, NC. We encourage all of you to come and attend. Money raised for CHERUBS will go to our CDH Family Support Fund.
(photo by Melody McBride)
We need baskets and other items for our silent auction! We encourage members to donate baskets in honor or in memory of their cherubs. Last year we had dozens of baskets in many different themes. This year we hope to have over 50 baskets. Here are a few ideas of basket themes....
Disney - antique Disney pieces, gift certificate to the Disney Store, or even tickets to Disney if you can afford to donate them
Noah's Ark - tickets to the Asheboro zoo, books on animals, "adopt" a zoo animal
Stars & Moons - buy a star, books on constellations, telescope, gift certificate to the UNC Planetarium
Butterflies - gift certificates to our local butterfly house. Also books on butterflies, maybe jewelry or ornaments of butterflies.
Dragonflies - books, photos, jewelry, ornaments, the movie Dragonfly on DVD
Sports - Duke, NC State and UNC basketswould be great items here in the Triangle! So would a Carolina Hurricanes basket for hockey fans or Durham Bulls or Carolina Mudcats basket for baseball.
Garden basket - seeds, gloves, small tools, bulbs, plant vitamins, book on gardening
Electronics - cell phone, ipod, chargers, etc... lots of electronics stores are franchises with local owners who will be more likely to donate
Games - big basket full of the traditional board games.. Monopoly, Scrabble, Yahtzee, etc
Photography Theme - you could include a digital camera, memory card, gift certificate to have prints made, picture frames, photo album, etc
We are also looking for celebrity autographed items to auction off. If you can help us to contact celebrities or can donate items, please contact us.
(photo by Melody McBride)
Below are some of the items donated for our 2008 Angel Ball:
Australia Basket donated by members of CHERUBS Australia
Avon Basket donated by Barbara Wagner in honor of Logan Wagner
Scrapbooking Basket donated by Barbara Wagner in honor of Logan Wagner
Beach Basket donated by Shane & Stephanie Olivarez in honor of Shelby Olivarez
Baby Phat Basket donated by Judi Toth in memory of Christopher Toth (photo by Emory Lane Photography)
Dr. Seuss Basket donated by Steve and Amy Miles in memory of Faith Miles (photo by Leah Bowman Photography)
Stress Relief Basket donated by Judi Toth in memory of Christopher Toth
Willow Tree Basket donated by Steve & Amy Miles in memory of Faith Miles
Victorian Basket donated by Judi Toth in memory of Christopher Toth
South Carolina Basket donated by Lynne Brogdon in honor of Baer Brogdon
Red Sox Basket donated by Nate & Corin Nava in memory of Gabriel Nava (photo by Leah Bowman Photography)
Italian Basket donated by Judi Toth in memory of Christopher Toth
Chesapeake Bay Basket donated by Judi Toth in memory of Christopher Toth
Arbonne Basket Donated by Barbara Wagner, in honor of Logan Wagner
donated by Kate Crawford in memory of Shannon Crawford
Autographed Jeff Foxworthy Book Donated by Dawn Williamson in memory of Shane Torrence
Olympics Edition Ray Ban Sunglasses Donated by Dawn Williamson in memory of Shane Torrence Green Bay Packers Donation