Congenital Diapraghmatic Hernia: State of Current & Future Research

The state of current research into Congenital Diapraghmatic Hernia (CDH) and what possible research opportunities lay in the future. Presented by Doug Miniati MD, Assistant Professor, UCSF Fetal Treatment Center.

CDH In The News - "Renovation for Ronald McDonald House"

http://abclocal.go.com/wpvi/story?section=news/local&id=7041408




Renovation for Ronald McDonald House
Wednesday, September 30, 2009 | 6:43 PM
ABC6 Action News

By Lisa Thomas-Laury

CAMDEN, N.J. - September 30, 2009 (WPVI) -- The Ronald McDonald House of Southern New Jersey celebrated a big $2-million dollar facelift today. It so happened on the 26th birthday of the home away from home for seriously ill children's families.

The project adds 3,800 square feet to the existing building and includes a completely renovated kitchen and a new recreation room, with a working model train set, inspired by the Philadelphia Eagles.

Paul Campise of Moorestown built the set for the 2005 Super Bowl and donated it to the Ronald McDonald House this year.

"I wanted to give it to somebody where kids could enjoy it and I managed to hook up with the Ronald McDonald House," Camprise said.
The Ronald McDonald House of Southern New Jersey celebrated a big $2-million dollar facelift today. It so happened on the 26th birthday of the home away from home for seriously ill children's families.

The project adds 3,800 square feet to the existing building and includes a completely renovated kitchen and a new recreation room, with a working model train set, inspired by the Philadelphia Eagles.

Paul Campise of Moorestown built the set for the 2005 Super Bowl and donated it to the Ronald McDonald House this year.

"I wanted to give it to somebody where kids could enjoy it and I managed to hook up with the Ronald McDonald House," Camprise said. The project also had volunteers redecorate the bedrooms with age-appropriate themes including Dora the Explorer, Wizard of Oz, and Harry Potter.

It is, after all, all about those who come to the Ronald McDonald House.

Jenni Pappas and her 3-year-old daughter Elena, from Memphis, are staying at the Ronald McDonald House, while awaiting the birth of a new baby, who has a congenital diaphragmatic hernia and will need care for several months.

Andrew Pappas says his family is grateful to be here.

"For Jenni and the peace of mind that she has that we're all together in a safe place, you can't put a price on it," Andrew said.

The Weaver family from Mississippi is staying at the House with their 3-year-old and an infant son, while his twin is treated for congenital heart disease next door at Cooper Hospital.

"So when you think about them coming from all over the world to get the best medical treatment for their children, affordability is really an issue, but more than affordability, it's that support system and this house accomplishes both," Denise Viola-Monahan of the Ronald McDonald House said.

For the Ehwakkad family it's a return visit, all the way from Egypt.

Doctors in Cairo told 14-year-old Ahmed, who broke his spinal column playing soccer, he'd never walk again, but surgery at the Hospital of the University of Pennsylvania has him back on his feet, and equating his visits, with a summer vacation; a vacation with a renovation that may be worth more than $2-million for those who come to visit.

Goodsearch and Goodshop for CHERUBS - it's a free way to raise money for a great cause!

You can raise money just by searching or shopping on-line! By going through Goodsearch.com instead of Google, Yahoo or another search engine, Goodsearch donates money to CHERUBS. It does not cost you a penny and it is powered by Yahoo. You can shop at 1000's of stores!

To make it even easier, you can download the free GoodSearch toolbar! It is safe and easy to install and it makes it so easy to search on-line and to shop as well! And it helps stores to remember that you are GoodShopping for CHERUBS even if you forget to go through the GoodSearch site to go shopping! You can download it at http://www.goodsearch.com/toolbar/ Don't forget to choose CHERUBS as your designated charity.



We all search on-line. We all shop on-line. Instead of making money for the search engines and stores, let's use Goodsearch to divert some of their profit to our great charity instead!

All money raised through Goodsearch will go to our CDH Family Assistance Fund, to help families meet their financial needs while dealing with Congenital Diaphragamtic Hernia.

Please also invite your family and friends to Goodsearch too!

GoodSearch
& GoodShop

YOU SEARCH OR SHOP...

WE GIVE!

Raise money for CHERUBS - The Association of Congenital Diaphragmatic Hernia Research Advocacy and Support just by searching the web and shopping online!

Search the web now!

Money-saving coupons!

Add to your site

CDH Fundraisers on Firstgiving.com

Come see how some CDH families are raising funds for CHERUBS on Firstgiving!!!!! You can get a FREE fundraising page for your cherub also! Thank you all so much for helping up to help families affected by Congenital Diaphragmatic Hernia!

Brienna Jaburg has raised over $2000 so far for cherub Elijah's birthday. Wow, Brienna, WTG!!!!!!!! We need to get you on our Fundraising Committee! :) http://www.firstgiving.com/briennajaburg

Desiree is raising money in memory of Marley Jane - http://www.firstgiving.com/desireecasillas

Kim is raising money in memory of Asher - http://www.firstgiving.com/babyasher

Kara is raising money in honor of Adam - http://www.firstgiving.com/karahess1

Dawn is money in memory of Shane - http://www.firstgiving.com/shanetorrence

Barb is raising money in honor of Logan - http://www.firstgiving.com/loganscdhfundraiser

Paige is raising money in memory of Caleb - http://www.firstgiving.com/paigecox

Allison is raising money in honor of Baby Forte - http://www.firstgiving.com/babyforte

Bessie raising money in memory of Emily - http://www.firstgiving.com/bessiebatton

Elizabeth is raising money in honor of Isabel - http://www.firstgiving.com/isabelruth

Heidi is raising money in honor of Julia - http://www.firstgiving.com/juliagcarlson

Megan is raising money in honor of Alyssa - http://www.firstgiving.com/honoralyssa

Stephanie is raising money in honor of Cody - http://www.firstgiving.com/codyajmaerten

The Decker Family is raising money in honor of Angelina - http://www.firstgiving.com/angelinadecker

New CDH Awareness Profile Stickers for Facebook!

Now you can raise CDH awareness all over Facebook by adding a Congenital Diaphragmatic Hernia Awareness Ribbon sticker to your profile photo. There are ribbons for both dark and light background photos. They are free and they help to raise CDH Awareness on your profile and on any application, game, cause, group etc that you join that people can see your profile photo in.

You can find and add the official CDH Awareness Ribbon stickers here: http://apps.facebook.com/fribbon/group.php?gid=548&ref=nf_t&ref=nf


We are really excited about this new sticker and about all the awareness that we are raising on Facebook! CHERUBS Facebook cause has reached over 7500 people and grows every day! Plus our groups, fan pages, event pages and more have reached over 10,000! Way to go CHERUBS members on Facebook!!!!

Congenital Diapraghmatic Hernia: What to Expect When Your Baby Goes Home

"Description of what to expect once a baby with Congenital Diapraghmatic Hernia is taken home from the hospital. Presented by Roberta Keller MD, Director of the ECMO Program, UCSF Neonatology, and the UCSF Fetal Treatment Center"

Congenital Diapraghmatic Hernia: What Happens After Birth?

"Treatment and care for a baby with Congenital Diapraghmatic Hernia (CDH). Presented by Roberta Keller MD, Director of the ECMO Program, UCSF Neonatology, and the UCSF Fetal Treatment Center"

Congenital Diaphragmatic Hernia: Tracheal Occusion Surgery

"Description of what happens during Fetal Tracheal Occusion Surgery used for treatment of Congenital Diaphragmatic Hernia (CDH). Presented by Hanmin Lee MD, Director of the UCSF Fetal Treatment Center."

Volunteering at CHERUBS

"Have you had a kindness shown? Pass it on; 'twas not given for thee alone. Pass it on. Let it travel down the years. Let it wipe another's tears, til in Heaven the deed appears. Pass it on." - Henry Burton



A letter from Dawn to our volunteers & those who wish to volunteer:

Dear Volunteers & Potential Volunteers,

I would like to say a few things….

First, thank you to Barbara Wagner. She’s been a HUGE help the past few months and honestly, CHERUBS wouldn’t have accomplished half that we have without her. She’s stepped up every single time I’ve asked for help. Every single time. She’s taken over all of Stephanie’s duties and tried to sort through all the unanswered e-mails, etc. This has doubled her volunteer work. Whenever a committee or a volunteer doesn’t get things done that they are supposed to, she steps up and helps me to get the project/service done. We are hoping – praying – that with all the new active volunteers that we can get more things done and off our personal plates… it’s very, very hard to have 3000 people depend on us. We need and appreciate your help!

Barb was a tremendous help at the conference. She helped organize, clean up daily, made the name badges, helped with the reservations, etc. So much that so many didn’t see – she did. Without even asking her, she was already doing things that needed to be done. Without complaining. She lost a lot of time just being able to visit with friends or see San Antonio because she was helping me and making sure that everyone else had what they need so they could enjoy their vacations and the conference. Without her and Karen Myers, there would have been no conference.

When I’m begging for help…. Barb volunteers (even when she’s already swamped herself!), she listens to me vent and she understands the frustrations of begging for help and not getting enough help or when a volunteer disappears for 6 months or a year and then yells at us for not doing whatever they wanted us to do. I’m saying that because it does happen… and she gets yelled at too. A lot of people would quit… I mean, she’s a volunteer too and no one deserves to be yelled at for giving so much of themselves freely to help CDH babies and parents. But she listens to it, apologizes for whatever their complaint is…. when of course it’s not her fault. And it’s not easy to do that or be yelled at… but she does it. For CHERUBS. I get it all the time too so I know how hard it is and I know how strong and dedicated she is. And when she’s not on-line volunteering, she’s running errands trying to find donations for the totebags or holding a bowl-a-thon or on the phone with a parent who needs support, or traveling to meet with parents or attend conferences or she’s making blankets. She does so much for CHERUBS and gets so little appreciation for all her sweat and tears and I just want to say…. thank you, Barb. We all appreciate and love you so much!!!!!!!

Second, I want to say thank to a few volunteers who really stood up and took initiative in the past few months. They didn’t wait to be asked to do something or ask and wait for us to find the time to write out explicit instructions on what they need to do or ask us to send them info instead of finding it on the web site or volunteer software…. they just said “Hey, would it help if I ________” and they did it. And we LOVE when that happens!!!!!!!!!!!!!!! :) So thank you to (in no particular order) Shana Kelly, Karla Holt, Karen Myers, Tracy Meats, Sarah Deskins, Darlene Silverman and Kara Hess for really digging in and being team players and making our jobs a bit easier!!!!!!!!!!!

That’s not to discount what ALL of our active volunteers are doing….. we appreciate each of you so much!!!!! Those of you who go out of your way to make sure to post on the forums and respond to blogs and FB posts. Those of you who were so dedicated in voting during the contest. Those of you who stood by us during drama and distanced yourselves from those involved in it to keep yourselves out of the mud and focus on CDH. Those of you who logged in to the software frequently and responded when I or Barb posted and who actively participated in discussions and providing services. You each really want to do all you can to help families affected by CDH….. despite the time or work that it takes. You give your time, hearts and even time away from your families to help others and truly personify the verse "Do unto others as you would have them do unto you." You are each such amazing people full of goodness, integrity, kindess, compassion and bring such honor to your cherubs. I am deeply honored to know and work with each of you. On behalf of myself, the rest of the members of CHERUBS and the whole CDH community.... thank you for all that you do!!!!!

Now looking foward to such a bright, promising future for the whole CDH community…. we have a TON to do… so many projects!!!!!!! :) We need HELP!!!!!

We have just recently lost half our volunteers during our revamp of the volunteer system… a few stepped down for various reasons (family issues, still dealing with CDH, no time to volunteer right now, etc) but most just didn’t respond (and those haven’t been active anyway so we expected that). That’s good and bad. Bad that we’ve lost so many volunteers. But good in that those positions are now clear to find active volunteers so that we can provide the services to CDH families. But this means we have a lot of work to do to fill these positions, get everyone trained and the committees and reps rolling so that we can be more productive and help more families!!!!! We can really use your help doing this!!!!

Honestly, I am so excited with this revamp of our volunteer system and so excited about having so many ACTIVE volunteers who want to help!!!!!! And with the new paperwork and new system we know that everyone involved truly wants to help, truly has selfless intentions, has the highest integrity and wants to be part of the world's largest CDH volunteer network. There is so much that we can do together!!!!!

Thank you all so much for all that you do to help us to help families affected by Congenital Diaphragmatic Hernia.

Dawn


CHERUBS needs many volunteers.

You can volunteer from home. Some positions take a few hours a month. It does not cost anything to volunteer - just your time, love and dedication to helping CDH families!!!! :)

We need help with the following:

- State & International Representatives (help on a local level)... Read More
- Fundraising Committee
- Research Committee
- Awareness Committee
- Grant Committee
- Conference Committee
- On-Call Committee
- Cards / PMs Committee
- Totebag Committee
- Translation Committee
- Books Committee
- Video Committee
- Angel Ball Committee (NC)
- Golf Tournament Committee (NC)
- Graphics Committee

And much more! You can read more about what each committee does and how to sign up at http://cdhsupport.org/volunteers/


5 Easy Steps To Volunteer!

1. Read over the Volunteer Roles to see what each position does.

2. Read over the Volunteer Checklist to see if you're ready to work directly with other CDH parents or in another capacity.

3. E-mail us at volunteer@cdhsupport.org and give us the following information:

• 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.

• Volunteer Rules
• Confidentiality Agreement
• Conflict of Interest Agreement
  

5. We'll contact you shortly! Thank you for volunteering to help CHERUBS help families affected by CDH!

Quote about CHERUBS

CHERUBS is the world's oldest, largest and most productive organization for Congenital Diaphragmatic Hernia. We are a grassroots organization. We are CDH Awareness, Support and Research pioneers. As an organization and as CDH parents - we are pioneers.

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

Thanks to all the wonderful hard work, dedication and determination of the volunteers at CHERUBS since 1995 we have left a trail for those families and organizations who have come after us. We may not have obliterated CDH (yet) but we have certainly made it easier for 1000's of families to cope with Congenital Diaphragmatic Hernia.

Thank you to all the volunteers and families who have walked with us along this path and left this trail.