CHERUBS 20th Anniversary Reunion Cruise & CDH Conference

Join us as we celebrate our charity's 20th year by sailing the seas!  

CHERUBS 20th Anniversary Reunion Cruise & CDH Conference

August 23 - 29, 2015

Sailing from Miami to Cozumel, Jamaica and Grand Cayman

Our charity is celebrating 20 years of serving the CDH Community by traveling the Caribbean and combining our annual CDH conference and luxury family vacation opportunities into an affordable, informative, supportive and FUN 20th Anniversary Reunion!

8/23/15 sailing of the brand new Carnival Breeze!- 6 night sailing arrives back on 8/29/15. Leaves from the port of Miami and visits, Jamaica, Grand Cayman and Cozumel with 3 days at sea.

Register here! 

Make a splash with Carnival cruises to Cozumel, a Caribbean island perched atop a coral reef. Cruises to Cozumel, Mexico, dock at the island’s heart—just minutes from San Miguel’s seafront shops and the white sand beach at Chankanaab National Park. Drift among star corals and sea fans on a Cozumel diving excursion or simply kick back on the beach beneath your own palm palapa as the turquoise waves roll in. Cruise to Cozumel for a scuba diving adventure along the Great Mesoamerican Reef. Enjoy a leisurely day of snorkeling with iridescent fish at Chankanaab National Park. Swim with dolphins at Dolphinaris.

Cruise to Jamaica to discover the historic charms of this former sugar boomtown. The plantation days of Falmouth, Jamaica, are gone, but what remains is the largest collection of intact colonial Georgian architecture in the Caribbean, set on sand-dusted streets and a wind-swept harbor. On Carnival cruises to Falmouth, Jamaica you can kick back on a crescent of white-sand beach and explore the great houses of old sugar plantations. Visit Falmouth’s quaint 18th-century waterfront village. Feel the rush of flowing water in Dunn’s River Falls. Kick back at the ultimate beach bar, Time ‘n’ Place. Swim in the turquoise seas at Jacob Taylor Beach when you cruise to Falmouth. Explore Jamaica’s sugar plantation past at Good Hope Plantation House.

Enjoy laidback British civility in a sun-splashed tropical locale on your Carnival® Grand Cayman cruise. Don’t let the island’s scrubland terrain fool you—a spectacular marine paradise lies just offshore of Grand Cayman, Cayman Islands, where a living undersea wall drops dramatically into the ocean deep. Cruises to Grand Cayman bring you directly to the best scuba diving and snorkeling in the kaleidoscopic Caribbean Sea. Stretch out on the glimmering white sands at Seven Mile Beach. Stroll the shops, cafes, and museums in George Town, Grand Cayman. Swim with gentle stingrays in Stingray City on your Grand Cayman cruise. Dive in the wondrous undersea world along the Cayman Wall. Spot native parrots and lizards in the Queen Elizabeth II Botanic Park.

Pricing:

For 2 people in a cabin; Inside- $1273.06, Balcony- $1773.06
For 3 people in a cabin; Inside- $1619.59, Balcony- $2119.59
For 4 people in a cabin; Inside- $1906.12, Balcony- $2526.12

Pricing includes conference and cruise, all taxes and port charges.  Pricing does not include optional excursions and add-ons.  Insurance is not included and may be purchased at $79.00 per adult and $49 per child. Tips are extra and may be paid on the ship or prepaid if you prefer. Recommended tip is $11.50 per person per day (which is $69 per person for the trip). If you need air, a hotel the night before/after that is additional and I can help you with that. 

There is an initial deposit of $35 per person due to hold each person's berth in the cabin. That is due immediately upon registration to hold the cabin.

Full (non-refundable) deposit of $250 per person is due on 3/27/15 or before. The remaining balance is due on 6/09/2015.   This will go through our event planner, Susie.  Please contact her with any questions about the ship.

Register here!

To make the deposit call Susie Kay, ACC at Piece of Cake Travel at 919-696-3007. I can also be reached at pieceofcaketravel@gmail.com for any additional questions you may have.

Carnival Breeze

Carnival Breeze — Miami’s hottest destination — sails toward islandy hotspots across the Caribbean. Fun-fan favorites like SportSquare and mouth-watering dining spots like Cucina del Capitano are just the beginning of how Carnival Breeze keeps the fun blazing.

Enjoy the island atmosphere of RedFrog Rum Bar, or south-of-the-border taco goodness at BlueIguana Cantina. There’s family fun (and games) at Hasbro, The Game Show and ha-ha hilarity at the Punchliner Comedy Club Presented by George Lopez. Let’s not forget Guy's Burger Joint, which features signature, hot-off-the-grill burgers designed by celebrity chef Guy Fieri! There are many fish in the sea, and you'll find a nice selection of them at Bonsai Sushi.

Carnival Breeze has the whole family covered — with water, that is — with a 320-foot-long Twister Waterslide at Carnival WaterWorks. Just for the kids there’s supervised youth programs like Camp Carnival and Club O2. And for the bigger people, there’s just-me-time to be had relaxing at Serenity Adult Only Retreat… after you pamper yourself at Cloud 9 Spa, of course. Then for fun after the sun’s done, have a truly moving experience at the multi-dimensional Thrill Theater, dance in your seat at Playlist Productions… or if you prefer to do your dancing on a dance floor, check out Liquid Nightclub.

If you notice a bit of the outdoors inside, don’t adjust your view. Carnival Breeze’s staterooms — and many of the public spaces around the ship — feature a scintillating tropical décor and contemporary furnishings that’ll transport you straight to warm Caribbean bliss.

Register here!

2013 Congenital Diaphragmatic Hernia Awareness

Current states that have proclaimed April 19th a day to raise Congenital Diaphragmatic Hernia Awareness as of May 8th:

1. Alabama
2. Arizona
3. Arkansas
4. Connecticut
5. Colorado
6. Georgia
7. Hawaii
8. Idaho
9. Illinois
10. Indiana
11. Iowa
12. Kentucky
13. Louisiana
14. Maryland
15. Massachusetts
16. Minnesota
17. Montana
18. Nevada
19. New Mexico
20. New York
21. North Carolina
22. Ohio
23. Oklahoma
24. Oregon
25. Pennsylvania
26. Rhode Island
27. South Carolina
28. South Dakota
29. Tennessee
30. Texas
31. Vermont
32. Virginia
33. Washington
34. Wyoming
35. Guam

Cities & Towns:

1. Chicago, IL
2. Raleigh, NC
3. Wake Forrest, NC
4. Everett, MA
5. Rowland, TX
6. Vero Beach, FL
7. Gainsville, FL
8. Providence, RI
9. Boston, MA
10. Peoria, IL
11. Huntsville, AL
12. Newbedford, MA
13. Saratoga Springs, UT
14. City of Salt Lake, UT
15. Nashville, TN
16. Wheeling, IL
17. Buffalo Grove, IL
18. Pittsburg, PA
19. Baltimore, MD
20. Cleveland, OH
21. Fortworth, TX
22. Boonsville, MS
23. Jumpertown, MS
24. North Wilksboro, NC
25. Manahawkin, NJ
26. Portsmouth VA
27. Fresno, CA
28. Mebane, NC
29. Lakeville, MN
30. Colorado Springs, CO
31. Morrisville, NC
32. North Richland Hills, TX
33. Hickory Hills, IL
34. Mesa, AZ
35. Tinley Park, IL
36. Tonganoxie, KS
37. Orland Park, IL
38. Dallas, TX
39. Aurora, IL
40. Baltimore, MD
41. Prattville, AL
42. Siloam Springs, AR
43. Selma, AL
44. Crest Hill, IL
45. Cedar Hill, TX

Senator Jeff Sessions introduced Senate Resolution 85 to proclaim April 2013 "National Congenital Diaphragmatic Hernia Awareness Month", co-sponsored by Sen. Ben Cardin.  It was passed unanimously in the United States Senate on March 20, 2013.

On April 9, 2013 Rep. Martha Roby (R-AL)  introduced H. Res. 114 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH.  5more Representatives have since joined as Co-Sponsors:

• Holding, George [R-NC13]
• Lance, Leonard [R-NJ7] (joined Apr 17, 2013)
• Jones, Walter [R-NC3] (joined Apr 23, 2013)
• Matheson, Jim [D-UT4] (joined May 07, 2013)
• Slaughter, Louise [D-NY25] (joined May 07, 2013)

Please ask your Congressmen to support the companion Resolution H Res 114 in the United States House of Representatives.

Go here to track the progress of the House Resolution - http://www.govtrack.us/congress/bills/113/hres144#

Download H Res 114 - http://www.govtrack.us/congress/bills/113/hres144/text

Senate Res. 85 - http://www.govtrack.us/congress/bills/113/sres85

Look Up Your Congressmen to find his / her mailing address - http://www.house.gov/writerep/

CDH and CHERUBS on CNN iReport!

Please read, recommend and repost as well as comment to help us convince CNN to make this national news!

Senator Sessions Works With Charity To Help Save 1600 Babies Born Each Year With Mysterious Birth Defect

http://ireport.cnn.com/docs/DOC-775825



PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

FOR IMMEDIATE RELEASE

Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com

Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions (R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.

CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.

“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.”

The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.

Massachusetts General's CDH Genetic Study Lab will have representatives walking in the parade. During their visit to Washington they will take blood samples from relatives of CDH victims for genetic research.

“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”

Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.

A virtual parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events.

If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.

###

Additional Events:

Washington DC Parade of CHERUBS takes place on April 19, 2012 starting at the Lincoln Memorial at 10:00.  It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor.  http://cdhawareness.eventbrite.com

The Denver Parade of CHERUBS takes place on April 19, 2012, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in a three-stage balloon release in memory of our CHERUB Angels, in honor of our CHERUB Warriors, and in anticipation of those CHERUBS who will arrive soon. The event was organized by Nicolle Colvin the Colorado State Representative for CHERUBS, Victoria Grover, and Jennifer Rodi.  http://denverparadeofcherubs.eventbrite.com/

The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born with CDH and is now a happy, thriving 8 month old. The Parade route is around Glen Oak park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park. 
http://peoria2012paradeofcherubs.eventbrite.com/

The Seattle Parade of CHERUBS takes place on April 19, 2012 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose Son, Hunter Stembler, was born with CDH. Christina invites Everyone that has been affected in any way by CDH, to take part in the parade. Meet on Pier 62/63 next to the Seattle Aquarium at 11:00 A.M. We will be walking to Waterfront Park and Releasing Balloons in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis.  http://seattleparadeofcherubs.eventbrite.com/

CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost. Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital). Close to 70 people (from three states) are expected to participate in this awareness event.  http://chicagoparadeofcherubs.eventbrite.com/

The St Louis Parade of CHERUBS takes place on April 19, 2012 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute.  It will include a walk around the hospital grounds, a presentation, candle lighting and lighted balloon release.  http://stlouis2012paradeofcherubs.eventbrite.com/

Oregon & SW Washington members of CHERUBS will be holding Portland's "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th from 1:00 pm - 3:00 pm at Legacy Emanuel Hospital in Portland, OR. The local event is being coordinated by CHERUBS Oregon Co-Rep grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, and member Andrea Martin whose 12 year old daughter Sarah is a CDH survivor. http://portlandparadeofcherubs.eventbrite.com/

CHERUBS United Kingdom Representatives Clair Maher and Melanie Parsons are working with member Cara Stevenson to coordinate a national Light Up the Night Event with candles and lanterns. 
https://www.facebook.com/cdhsupport#!/events/248708328546723/

A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media.  More information can be found at https://www.facebook.com/CherubsVirtualParade

Congressional Bill - http://www.cdhbills.org

2012 Annual Member Census - CHERUBS Helps CDH Families in 52 Countries

click on the map to enlarge the image.


CHERUBS has been priviledged to help over 3900 families affected by Congenital Diaphragmatic Hernia since 1995.   Our membership has increased drastically in 1 year from members in 38 countries to members in 52 countries on 6 continents.  Our membership includes families and medical professionals touched by CDH.

click on the map to enlarge it.

3069 members are located in the United States.  The map above shows the membership in each state, as well as highlights those states holding parades for April 19th, the celebration of Congenital Diaphragmatic Hernia Awareness Daily. 

If you would like to talk to other families, please visit our free support forums at http://www.cdhboards.org

Also shown are those states whose governors have written proclamations for April 19th as of March 29th.   Several other states are in the process of confirming.   Thank you to all of our members who are writing their governors to help raise awareness.  We are thrilled at such a great response without promoting proclamations this year.  If you would like to get a proclamation for your state, it's as simple as going to your governor's web site and sending him / her an e-mail request for a proclamation, telling them about CDH and sharing  your story.  We ask that you please use the term "Celebration of Congenital Diaphragmatic Hernia Awareness Daily" rather than "Congenital Diaphragmatic Hernia Awareness Day" as that is trademarked by another charity.   Thank you for helping to raise awareness!!!

CHERUBS 2010 International CDH Conference Details!!!

CHERUBS 2010 International CDH Conference Details!!!

CHERUBS 2010 International Member Conference

May 13- 16, 2010
Orlando, Florida

Guest Speakers
CDH Research Teams
Round Table Discussions
Pizza Party
Kid's Entertainment
and more!


Summer Bay Resort Holiday Inn Express
Orlando, Florida

$65.00 per night special conference rate
To book at this rate, you must reserve  your room by April 13, 2010!


Our conferences are designed for families of CDH survivors, grieving CDH families, adult survivors and CDH researchers!  

Since our first conference in 2000, CHERUBS is proud to work with the world's best CDH hospitals and researchers to bring the families and the medical world together.   Our 2009 conference bought together 8 CDH groups and families from 4 countries!  

Members who have attended our conferences will tell you that they learned so much more about CDH, made new friends and gained a lot of support.

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhsupport.org

CHERUBS CDH Conference

• 2010 Conference
• 2010 Researchers
  
• 2010 Sponsors
• Hotel Information
• CDH Family Registration
• Researcher Registration
  
• Disney & Local Attractions
• Event Items
  

Past Events

• 2009
• 2008

CHERUBS

• Join CHERUBS
• CDH Awareness Shop
• About Us
• Disclaimer
• Contact Us

About Our CDH Conference:

Expect to learn a lot about Congenital Diaphragmatic Hernia!   Meet new friends, see old friends and participate in research for various hospitals.  

For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You may register for free at http://www.cdhsupport.org/members

Children are welcome and babysitting services will be provided during conference hours.   Volunteer babysitters are needed and all parents who request babysitting are obligated to donate a minimum of 1 hour of volunteer time per child to help out.

The hotel offers free breakfast and shuttle to and from the amusement parks.

Families are responsible for all other meals and all transportation, accomodations and entertainment.

CHERUBS does not charge a conference fee.

Many families of survivors are eligible for grants to cover travel expenses to medical conferences.  Ask your child's social worker for more information.

Registration:

Make sure to register with us so that we can expect you!   Registration deadline is May 1, 2010.

CHERUBS has a block of 20 rooms reserved at a discount rate at the Summer Bay Resort Holiday Inn Express.   They are available on a first come, first serve basis.    To book at $65.00 per night, you must reserve a room by April 13th.

If you are coming alone and would like to share a room with another member, visit our forums to find a roommate.

Conference Schedule:

Thursday, May 13, 2010

7:00 - 9:00 pm - Pizza Party and Introductions

Friday, May 14, 2010 - CDH Support

8:00 am - 8:45 am Round Table Discussions Session 1

• For CDH Survivors (choose one)
• Physical and Occupational Therapies
  
• Feeding Issues
  
• For Grieving CDH Families (choose one)
• Faith & Doubts In Grief
  
• Dealing With Anger
  

9:00 am - 9:45 am Round Table Discussions Session 2

• For CDH Survivors (choose one)
• IEPs for School Age Children
• Early Intervention for Infants & Toddlers
• For Grieving CDH Families (choose one)
• Grief and Siblings
• Dealing With Special Days
  

10:00 am - 10:45 am Round Table Discussions Session 3

• For CDH Survivors (choose one)
• Dealing with Family & Friends
• Marriage & Having a Special Needs Child
• For Grieving CDH Families (choose one)
• Dealing with Family & Friends
• Marriage & Grief

11:00 am - 11:45 am Round Table Discussions Session 4

• For CDH Survivors (choose one)
• Pregnancy After CDH
• Helping Other CDH Families
• For Grieving CDH Families (choose one)
• Pregnancy After CDH
• Creating Something Good From Sadness

Saturday, May 15, 2010 - CDH Research

8:00 am - 11:00 am - Guest Speakers On Current CDH Research Studies

8:00 am - 9:00 am  - Meaghan Russell and Mauro Longani from Mass General

9:00 am - 10:00 am  - Speaker Information coming soon!

10:00 am - 11:00 am  - Speaker Information coming soon!

11:00 am - 12:00 pm  View Research Booths, Sign up for CDH Research Studies

Sunday, May 16, 2010 - CDH Awareness

8:00 am - 8:30 am - "Current and future global efforts to raise CDH Awareness" by Dawn Williamson, President & Founder

8:30 am - 9:30 am - Group discussion on how we can raise more CDH Awareness as a community

9:30 am - 10:30 am - Group discussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

10:30 am - 11:00 am - Saying Good-byes

Our 2009 Conference in San Antonio, TX

Our 2008 Conference in Durham, NC

Cherubs are proclaimed the international symbol of Congenital Diaphragmatic Hernia Awareness

Long before there were "awareness ribbons" and "awareness bracelets", long before it was fashionable to wear a color for a cause - there was CHERUBS.  In 1995, with the creation of the world's first CDH non-profit, cherubs were proclaimed the international symbol of Congenital Diaphragmatic Hernia Awareness.   Most CDH families refer to their CDH patients as "cherubs".

Cherubs are baby angels, symbols of hope, faith, miracles for newborn cherubs and survivors.  They are a symbols of those babies lost to CDH as well.  This symbol was carefully chosen to represent all families affected by this devastating birth defect and CHERUBS was named for 2 babies in particular;  Preston Montague and Andrea Jones, both lost to CDH and both hospital roommates of our founder's cherub, Shane Torrence.   There could not be a more accurate or special symbol for babies affected by Congenital Diaphragmatic Hernia than cherubs.

Since 1995, the word "cherub" has raised such CDH Awareness on the internet!   Do a search for "cherub" or "cherubs" on any major search engine and you will find CHERUBS in the top 10 - raising CDH awareness along the way!  In fact, several CDH families found our organization accidentally by searching for baby angels on-line.   Even Wikipedia has included our charity on their page about cherubs. 

Look at all the wonderful CDH awareness we are raising on-line every time someone does a search for "cherub" or "cherubs".   These ranks are out of the millions of web sites that feature angels and cherubs.

Google - Ranked #2, behind Wikipedia's page where we are also included
Yahoo - Ranked #2, #5, #8 and #9
Bing - Ranked #3
Ask.com - Ranked #1, but that has nothing to do with sharing Wendy Petty as a spokesperson for Ask.com and CHERUBS!  :)
Altavista - Ranked #2, #5, #7 and #8
Dogpile - Ranked #6
Goodsearch -  Ranked #2, #5, #8 and #9 but they pull from Yahoo.com

 

In celebration of 15 years of serving the Congenital Diaphragmatic Hernia community and in celebrating our unique symbol of hope, miracles, faith, kindness and compassion, we will be soon adding more "cherubs" into our sites, projects, and the CDH Awareness Shop!

CHERUBS Leads The Way For CDH Information and Support

"Do not go where the path may lead, go instead where there is no path and leave a trail" - Ralph Waldo Emerson

We have done a lot of posting today and are receiving a lot of great feedback. And also news that our posts are being reposted all over the internet!

We LOVE that CHERUBS is always ahead of the game announcing CDH research, services and projects!

As the world's first, largest and most active CDH charity we feel it is our duty to lead the community in posting the latest research and news and offering new services continuously. We have the BEST members and volunteers who work together to benefit CDH families and the whole CDH community!

Even other organizations and groups track our blogs and posts to keep up with CDH - imitation is indeed the sincerest form of flattery so we're so glad that everyone comes to CHERUBS to see what we're posting! We are honored to be the one of the CDH community's top resources for information, awareness, research and support!

Feel free to post our... posts on your FB acct, blogs, sites, etc!!!! At CHERUBS we're always happy to share our hard work to raise CDH Awareness!!

For more CDH support, research and information please visit our site http://www.cdhsupport.org

CHERUBS 2009 International Member Congenital Diaphragmatic Hernia Conference

Our 2009 International Member Conference for families affected by CDH was a wonderful success!


We had 17 families and 8 organizations represented from 4 countries. It was truly an international CDH conference. One person called it a "CDH Summit" but we hate to use the word "summit" as that is a meeting of peace of countries / organizations who can't get along - and we most definitely all get along! :) It was a "CDH Conference" - for and about Congenital Diaphragmatic Hernia. It included CDH Research, Awareness and Support.

It began on Wednesday with our Pizza Party and Introductions. We presented Danielle Kessner of CHERUBS Australia with a cherub statue. In 2000, CHERUBS members presented Dawn with a crystal statue. Now that CHERUBS Australia and CHERUBS UK have their own non-profit status and president, it is fitting that all 3 have the statue. Brenda Lane of CHERUBS UK received hers on Thursday as they missed the Pizza Party. Also at the Pizza Party, the new CDH song "I'll Never Let You Go" by The Jammies was unveiled. We will post that video in a few days.




Our hotel was just beautiful and Chris Arango of the San Antonio Holiday Inn Select was wonderful. There were a few issues but he fixed them ASAP. We were very impressed with them!

On Thursday, we were blessed with incredible guest speakers!!! Daryl Scott MD and David Pearson from Baylor's CDH Research Team were wonderful! Their presentation was very informative and the parents were able to ask lots of questions. We all learned quite a bit about genetics and CDH!

Then Dr. Kevin Lally presented from the CDH Study Group and we learned about the history of CDH, the future of CDH and all the research that the group is doing. And Pam Lally was so sweet to provide us with the latest (unpublished) survey tabulations. The parents were able to ask more questions about ECMO, CDH repair and survival rates. It was extremely informative.


On Friday, Drs. Meaghan Russell and Mauro Longoni from Boston Children's spoke on their CDH Research Study. We learned even more about CDH and genetics and how they use mice to create diaphragmatic hernias. The parents got to ask more genetic questions. They bought us copies of CDH News, their newsletter, as well and it featured a photo of last year's conference! :)


On Saturday and also on Friday we had round-table discussions and parents had the opportunity to talk to each other about their stories and various topics dealing with CDH. We all learned a lot from each other and we laughed, cried and shared so much. The doctors sat in on the discussions and learned from parents just as we learned from them. It was such a blessing to have the opportunity to do this.





And on Saturday, the kids learned a little song about CDH and performed it for us. Video to come soon!


Our conference ended each day at noon so that families could sightsee and socialize with other CDH families. Families went to the Alamo, Sea World, the River Walk, rodeos, shopping and more. Often, you would find families convening at the hotel swimming pool. The doctors fit right in and 2 of our Board Members had dinner with Meaghan and Mauro and had the opportunity to ask them lots of questions face-to-face. Videos will be posted soon!



This conference was also a milestone for CHERUBS - it was the first time the Presidents of all 3 CHERUBS have met in person. Dawn Williamson of CHERUBS (USA), Danielle Kessner of CHERUBS Australia and Brenda Lane of CHERUBS UK came together for the first time this year. We also welcomed Kim Richards of The Olivia Raine Foundation and Michelle Brown of Little Lambs. Not to mention doctors from 3 more CDH studies - Kevin and Pam Lally of the CDH Study Group, Meaghan Russell and Mauro Longoni of Mass General / Boston Children's CDH Study and Daryl Scott and David Pearson from Baylor College's CDH Study. All 8 organizations are members of ACDHO, The Alliance of Congenital Diaphragmatic Hernia Organizations - a group of CDH organizations and research centers dedicated to working together to help support, protect and advance the CDH community. 8 CDH organizations all together at once to help each other and CDH families!!!!

Talking to the other members of ACDHO and to the families we got such great advice on how else we can help the CDH community. It was wonderful to talk to the other organization leaders and get their opinions on so much and learn about services that they offer, rules they give their volunteers, how they deal with certain situations, etc. Listening to the families during the round-table discussions and listening to the questions that they asked the doctors, we learned what topics they really want to know more about and want to see us post more about. We learned so much that we will all bring forward to the CDH community!

We want to say thank you to our guest speakers and to Karen Myers, a member who went above and beyond to make this conference possible. We'd also like to thank Barbara Wagner, who showed what a CHERUBS volunteer is all about with all she's done to help us. And to our sponsors and volunteers:

Conference Volunteers
A very, very special thank you goes to the following individuals:

Alec Myers – in memory of Kaleigh Myers
Barbara Wagner – in honor of Logan Wagner
Chad Knudsen
Charles Hess – in honor of Adam Hess
Chris Arango
Chris Meats - in honor of Ian Meats
Craig Williamson – in memory of Shane Torrence
Dave Holt - in honor of Braden Holt
Dave Lipsit
Dawn Williamson – in memory of Shane Torrence
Fernanda Arce – in honor of Juan Pablo Arce
Jean Williamson – in memory of Shane Torrence
Jennifer Brown – in honor of Adrian Brown
Kara Hess – in honor of Adam Hess
Karla Holt – in honor of Braden Holt
Karen Myers - in memory of Kaleigh Myers
Kevin Lally, MD
Kimberly Richards – in memory of Olivia Raine Richards
Kimberly Switzer – in memory of Asher Switzer-McCoy
Lynne Brogdon – in honor of Baer Brogdon
Pam Lally, MD
Penny Campsey – in honor of Cole Campsey
Primerica
Tara Hall - in honor of Brandon Hall
The Jammies

We would like the following for their generous donations:

Chuck and Kara Hess, in honor of Adam Hess
Jennifer Brown, in honor of Adrian Rivera
Karen Myers, in memory of Kaleigh Myers
Kevin and Barbara Wagner, in honor of Logan Wagner
Kimberly Richards, in memory of Olivia Raine Richards


Our conference concluded on Saturday, much to everyone's sadness. There were a few tears saying good-bye. We hope to all see each other again next year in San Francisco at our 2010 CDH Conference - along with lots of new families.


It truly was a wonderful week. Hopefully everyone left with more information on CDH, new friends and knowing that we are a big CDH family working together to help them and all those affected by Congenital Diaphragmatic Hernia.

2009 Congenital Diaphragmatic Hernia International Conference Items Available!

CHERUBS 2009 International Member Conference Items now available on our cafepress store! Order some now and have them ready for our Congenital Diaphragmatic Hernia Conference in San Antonio, Texas on July 22 25, 2009! Wear them before and after the conference to raise Congenital Diaphragmatic Hernia Awareness!

Hat, shirts, stickers, sweatshirts, onesies, hoodies, bibs and much more!

http://www.cafepress.com/cherubs/6448749

CHERUBS 2009 International Conference

The date and location have been set! July 23-25, 2009 in San Antonio, Texas! The hotel location will be posted soon.

Our conference include several CDH experts as guestspeakers, round table discussions for both families of survivors and grieving families, pizza party, entertainment for the kids and more!

This year we are expecting about 100 members with families flying in from as far as Australia! We will have at least 4 countries represented at this conference - hopefully many more.

All members of CHERUBS (including CHERUBS UK and CHERUBS Australia) are welcome to attend! If you're not a member, sign up for free at http://www.cdhsupport.org/members

CHERUBS 2008 International Member Conference - Book Rooms!

2008 International Conference for Families of Children born with Congenital Diaphragmatic Hernia.

Now you can book your rooms for the conference!

Details here - http://www.cdhsupport.org/members/viewtopic.php?t=1442&highlight=

July 25 & 26, 2008
Raleigh - Durham, NC

For all CHERUBS members!!! You *must* be a member to attend so make sure that you join!

http://www.cdhsupport.org

To CDH Parents & CHERUBS Members - we need your help!

From our listservs and web site....


Hi Everyone,

This is going to be blunt and I'm sorry if it sounds cold but I'm having to put on my "business hat" here because this is extremely important...

I'm trying to wrap up the latest issue of our newsletter and in our newsletters we always list our State & International Representatives. We're about to lose severals Reps because they haven't turned in their reports (come on everyone - it only takes 10 minutes, please get them in!). Rather than list our current list of Reps and have it inaccurate because so many Reps are AWOL, I think maybe it's best to just leave those states or countries blank so that volunteers can come forward who want to be Reps.

Our State & International Representatives are the middle people for us... we have over 2200 members now. Back when we had just 50 members on these lists we could keep up with everyone. I remember when I knew everyone's spouses, kids, birthdays and street addresses by heart. We have too many members now for me to do that. We *don't* want to lose that close-knit small group feeling so that's where our Reps come in. They keep up with members in their state / country, make sure that they have info, prayers or support when they need it, someone close by with experiences with the same hospitals. They also make sure that hospitals in their states or countries have brochures and information so that when a new or expectant baby is diagnosed these parents have information on CDH and where to turn for support. Without Representatives in these states and countries, these services are not provided. Parents don't have the information and support that they should be getting.

We also have started a new Rep service (not sure that's the right word).... we are trying to get 2 Reps for each state and country - 1 grieving parent and 1 parent of a survivor. We have a lot of states and countries that not being served. We need *help*!!!!

..Those of you who have lost your cherubs and want to find a way to do something in their memory... this is the perfect avenue to do that. Those of you who still have your cherubs and want to find a way to give back or pay tribute to your blessing... again, this is the perfect avenue to do that. Support and awareness every day, helping families one on one. Making a difference in the lives of families devastated by CDH.

If you a State or International Representative and you haven't sent your report in, we need it by noon tomorrow. We have a lot of families to help and we need those positions filled and functioning. No offense, I know some of you have busy lives or are grieving or raising sick children - we understand that and it's ok if you can no longer volunteer. We are just trying to help as many families as possibile and we need a smooth running volunteer system to do that. If you still want to volunteer, you *must* log onto the new site and keep up with the volunteer forum. Shelly, Stephanie and I have all practically begged you to log in and get your reports in... we have too much to do, we can't beg anymore. It's taking away time better well spent helping families and working on other projects.

If you would like to volunteer, please read over the volunteer section at http://cdhsupport.org/volunteers/ Print off and sign the Volunteer Rules at
http://www.cdhsupport.org/volunteers/rules.php. If you'd like to be listed in this newsletter, we need those in ASAP (by noon tomorrow) so please fax them to 815-425-9155. You can also print them, sign and scan them and e-mail it to volunteer@cherubs-cdh.org for the newsletter deadline but you must also mail them in as well. You must be a member of CHERUBS to volunteer and though you can belong to any other CDH group, we ask that you only officially volunteer for one or it would be a conflict of interest.

If you have any questions, please e-mail me at volunteer@cherubs-cdh.org or our Representatives Volunteer Coordinator, Stephanie, at solivarez@cherubs-cdh.org

Thank you all! We know that lots of you will stand up and volunteer to help CDH families!

Dawn