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Thread: CDH Research Site & Fund

  1. #1

    CDH Research Site & Fund

    http://www.cdhresearch.org

    This web site is a project of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.

    CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatment of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.

    A fund has been set up for raise money for Congenital Diaphragmatic Hernia Research at

    http://www.firstgiving.com/cdhresearch

    You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org

    This fundraising page is to help raise funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $500 per month. Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

    Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.

    Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

    The cause of Congenital Diaphragmatic Hernia is not yet known.

    50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects. Founder and President of CHERUBS.

  2. #2
    HAVE YOU TAKEN A LOOK AT THESE LINKS YET?????

    The importance of Research for CDH is something that needs to be done and has needed to be done for MANY YEARS.

    Take a look and you will see just how important this Research site truly is.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  3. #3
    I will definately have to check that out later on tonight!I took a quick look the other day but didnt get to see them all...
    Mommy to Haylee 01/26/2004 and My cherub Asher 07/04/2007- LCDH discovered at 18 weeks- medical termination at 24 weeks. Hypoplastic left lung and right jaw- pulmonary hypertension- Secundum type ASD- left liver lobe- stomach- appendix- and small bowel herniated www.freewebs.com/babyasher Ashers webpage http://www.youtube.com/watch?v=dxS8F4dkHjE Ashers video montage

  4. #4
    With 2500 members, all of us devastated by CDH and we have the chance to DO SOMETHING to help find the cause and prevention of CDH.... we have only 3 members who will help? Come on everyone, we have the world's largest CDH database - the most CDH babies with the most information. The CDH Study Group is amazing. They are studying the surgical treatment of CDH. But NO ONE BUT CHERUBS is studying the possible causes of CDH with so many cherubs as we are. Are we going to sit on this information and do nothing when we could really make a difference here? Or are we going to band together to get this research done?
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects. Founder and President of CHERUBS.

  5. #5
    Senior Member
    Join Date
    Dec 2007
    Posts
    599
    I'm sorry. I donated to the trademark fund because that's the one I saw first, but I'm out of disposable income at this time. I can't work if I want Michael to have nursing (my insurance won't cover it and we're very close to the income cap for SSI; for that matter we don't get SSI in October because we're over), and he needs nursing coverage.
    ~Mel Mother of Michael: RCDH- ECMO (11 days)- cranial evacuation- VP shunt- hernia repair- g-tube- Nissen fundoplication- pyloroplasty- ASD and VSD closures- tracheostomy- hypospadias repair- pulmonary hypertension...but what he lacks in lung capacity he more than makes up with charisma!

  6. #6
    Melissa, I totally understand! Actually the money you donated was over our cost for the trademark (we received a donation to cover that cost) so it's been moved over the research fund. So you've officially helped both funds! THANK YOU!!!!

    I completely understand about the SSI and income and nursing and all that. I was under that same cloud when I had Shane, the $4 million dollar kid. Our healthcare system is horrible - no family should be stuck in that situation because their child was born sick. I couldn't work either when I had Shane for that same reason. His dad had to work a low paying job so we wouldn't lose SSI, which gave us his insurance. No insurance company would take the kid with every pre-existing condition, trach, vent, etc. Working hard to make little to pinch pennies to buy diapers some days because the govt says you can't make more money or your child has no medical services. When you really want to work and build a good life for your family! Horrible, just horrible. We thought about moving to Canada for the healthcare. I'm a Republican but boy do I wish the Dems would get that universal healthcare passed! No one understands how devastating a medical problem can be to every part of a family unless they've been through it. Ok, I'll get off my soap box now. But I feel for you, I truly do!!! But Michael is so worth it all!

    Love the new photo!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects. Founder and President of CHERUBS.

  7. #7
    I have been trying to figure out how to participate in the research study but all the links to participate come up with errors or aren't actual links. How do we help if we want to, or is it fundraising not giving info for the research?
    darcy

  8. #8
    Hi Darcy, we're trying to get the software up and running for that site still - hence the fundraising page. To run a database of that size, with that much info on the fly, it will cost us about $500 a month. So we're working on it! In the meantime, you can participate by making sure that all the info under your profile is accurate - as that is what we will initially move over to the database site, along with 100's more questions - but you will be notified when that happens.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects. Founder and President of CHERUBS.

  9. #9
    Thanks Dawn, I wasn't sure how it worked.
    darcy

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