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.

CDH Research Study - Molecular Genetic Analysis of Congenital Diaphragmatic Hernia (CDH)

CHERUBS always encourages CDH families to participate in as many CDH research studies as possible to help find the cause, prevention and best treatment of Congenital Diaphragmatic Hernia!


http://www.clinicaltrials.gov/ct2/show/NCT00950118?term=CDH&rank=1

Molecular Genetic Analysis of Congenital Diaphragmatic Hernia (CDH)

This study is currently recruiting participants.

Verified by Columbia University, July 2009

First Received: July 29, 2009 Last Updated: July 30, 2009 History of Changes

Sponsors and Collaborators:	Columbia University Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Information provided by:	Columbia University
ClinicalTrials.gov Identifier:	NCT00950118

Purpose

Congenital diaphragmatic hernia (CDH) is a birth defect that occurs when the diaphragm (thin sheet of muscle that separates the abdomen from the chest) does not form properly. When an opening is present in the diaphragm, organs that are normally in the abdomen can be pushed (herniated) through the opening and be present in the chest. Currently little is known about why this birth defect occurs.

Through this study ""Molecular Genetic Analysis of Congenital Diaphragmatic Hernia" the investigators hope to learn more about whether certain genes contribute to CDH. Genes are the instructions or blueprints for our bodies. They tell our bodies how to grow and develop. Sometimes when a mistake occurs in one or more of our genes our body does not develop properly and this can lead to a CDH. The investigators hope that the information gained through studying the genes of children with CDH and their parents, will lead to significant advances in the diagnosis, prognosis, prevention, and treatment of this disease.

Condition
Congenital Diaphragmatic Hernia

Study Type:	Observational
Study Design:	Case-Only, Prospective
Official Title:	Molecular Genetic Analysis of Congenital Diaphragmatic Hernia

Resource links provided by NLM:

MedlinePlus related topics: Hernia

U.S. FDA Resources

Further study details as provided by Columbia University:

Primary Outcome Measures:

• survival [ Time Frame: 2 years ] [ Designated as safety issue: No ]
  
• development [ Time Frame: 2 years ] [ Designated as safety issue: No ]
  

Secondary Outcome Measures:

• growth [ Time Frame: 2 years ] [ Designated as safety issue: No ]
  
• pulmonary hypertension [ Time Frame: 2 years ] [ Designated as safety issue: No ]
  

Biospecimen Retention: Samples With DNA

Biospecimen Description:

whole blood, tissue, saliva

Estimated Enrollment:	500
Study Start Date:	November 2008
Estimated Study Completion Date:	November 2012
Estimated Primary Completion Date:	November 2012 (Final data collection date for primary outcome measure)

Groups/Cohorts
Congenital Diaphragmatic Hernia (CDH) Humans affected with congenital diaphragmatic hernia (CDH)
Unaffected Healthy family members of individuals affected with congenital diaphragmatic hernia (CDH)

Detailed Description:

The goal of this study is to identify genes that convey susceptibility to congenital diaphragmatic hernia in humans. The identification of such genes, and examination of their structure and function, will enable a delineation of molecular pathogenesis and, ultimately, prevention or treatment of congenital diaphragmatic hernia. There are many different possible modes of inheritance for congenital anomalies, including autosomal dominant, autosomal recessive, and multifactorial. Multi-factorial inheritance is responsible for many common medical disorders, including hypertension, myocardial infarction, diabetes and cancer. This type of inheritance pattern appears to involve environmental factors as well as a combination of genetic variations that together can predispose to or produce congenital anomalies, such as congenital diaphragmatic hernia.

Our study is designed to establish a small, well-defined genetic resource consisting of 1)Nuclear families suitable for linkage analysis by parametric,non-parametric (e.g. sib pairs, TDT) and association techniques, 2) Individuals with congenital diaphragmatic hernia who can be directly screened for allelic variation in candidate genes, and 3) Individuals who can serve as controls (are unaffected by congenital diaphragmatic hernia).

Neonates and their families will be collected from homogenous and heterogeneous populations. By characterizing diverse populations, it should be possible to increase the likelihood of demonstration of genetic variation in selected candidate genes that can then be used in association and linkage studies in individual subjects with congenital diaphragmatic hernia.

The focus will be on neonates recruited through clinical services at the New York Presbyterian Medical Center.

Our recruitment efforts will be in collaboration with physicians in the Pediatric Surgery Department and the Neonatology Departments. The patients and their families will be recruited using the prenatally diagnosed babies born at CHONY and the babies born at outside institutions

Eligibility

Genders Eligible for Study:	Both
Accepts Healthy Volunteers:	Yes
Sampling Method:	Probability Sample

Study Population

Children/neonates with an unrepaired congenital diaphragmatic hernia

Children/neonates with a reparied congenital diaphragmatic hernia

Women who are pregnant with a fetus diagnosed with congenital diaphragmatic hernia

Individuals with a family history of congenital diaphragmatic hernia

Criteria

Inclusion Criteria:

• All individuals affected with a congenital diaphragmatic hernia (CDH), or with a family history of a CDH

Exclusion Criteria:

• Individuals with no family history of a family member affected with congenital diaphragmatic hernia

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00950118

Contacts

Contact: Julia Wynn, MS	212-305-6987	jw2500@columbia.edu
Contact: Wendy Chung, MD, PhD	212-305-6731	wkc15@columbia.edu

Locations

United States, Michigan
University of Michigan/ CS Mott Children's Hospital	Recruiting
Ann Arbor, Michigan, United States, 48167-5245
Contact: George Mychaliska, MD 734-763-2072 mychalis@med.umich.edu
Principal Investigator: George Mychalisa, MD
United States, Nebraska
Children's Hospital of Omaha/ University of Nebraska	Recruiting
Omaha, Nebraska, United States, 68114
Contact: Kenneth Azarow, MD 402-955-7400 kazarow@childrensomaha.org
Principal Investigator: Kenneth Azarow, MD
United States, New York
Morgan Stanley Children's Hospital of New York- Presbyterian (Columbia University Medical Center)	Recruiting
New York, New York, United States, 10032
Contact: Julia Wynn, MS 212-305-6987 jw2500@columbia.edu
Contact: Wendy Chung, MD, PhD 212-851-5313 wkc15@columbia.edu
Principal Investigator: Wendy Chung, MD, PhD
Sub-Investigator: Marc Arkovitz, MD
United States, Ohio
Cincinnati Children's Hospital and Medical Center/ University of Cincinnati	Recruiting
Cincinnati, Ohio, United States, 45229
Contact: Kim Lyons, RN 513-636-3774 kim.lyons@cchmc.org
Principal Investigator: Tim Crombleholme, MD
United States, Pennsylvania
University of Pittsbrugh Medical Center	Recruiting
Pittsburgh, Pennsylvania, United States, 15213
Contact: Douglas Potoka, MD douglas.potoka@chp.edu
Principal Investigator: Douglas Potoka, MD

Sponsors and Collaborators

Columbia University

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Investigators

Principal Investigator:

Wendy Chung, MD, PhD

Columbia University

More Information
No publications provided

Responsible Party:	Columbia University ( Wendy Chung, MD, PhD )
Study ID Numbers:	IRB-AAAB2063, CFDA 93848
Study First Received:	July 29, 2009
Last Updated:	July 30, 2009
ClinicalTrials.gov Identifier:	NCT00950118 History of Changes
Health Authority:	United States: Institutional Review Board

Keywords provided by Columbia University:

Congenital Diaphragmatic Hernia (CDH) Genes Genetic

chromosome chromosome microarray microarray

Additional relevant MeSH terms:

Pathological Conditions, Anatomical Hernia Hernia, Diaphragmatic

ClinicalTrials.gov processed this record on September 27, 2009

News Article - Scotland sets up ECMO expert group

http://thegovmonitor.com/world_news/britain/scotland-sets-up-ecmo-expert-group-6906.html

Scotland sets up ECMO expert group

Source: Scottish Government Posted on: 27th September 2009

Health Secretary Nicola Sturgeon today announced the establishment of an expert group to consider the medium to long term provision of adult ECMO treatment in Scotland.

Scotland already has provision of ECMO for children and heart surgery patients. This group will consider the need for ECMO for adults who may require longer term critical care for the purpose of respiratory support.

Scotland’s current arrangements allow patients to receive ECMO treatment where clinically necessary. Scotland’s specialists liaise with UK colleagues in this field and work with the commissioned UK co-ordinating centre in Leicester and with similar European centres.

Treatments such as ECMO require major resource and input from specialist nursing, medical and technical personnel (eg blood transfusion and laboratory services). It is important that any decision made on future provision is not to the detriment of other services such as cardiac surgery.

The key remit of the expert group is:

* To consider the findings of the recent CESAR trial and previously published evidence for the use of ECMO in adults.
* To take evidence from leading experts regarding the efficacy and safety of ECMO treatment in adults.
* Having considered this evidence, to provide recommendations to the Cabinet Secretary for Health and Wellbeing regarding current and future ECMO provision in Scotland.

The Group will be Chaired by Dr Simon Mackenzie, President of the Scottish Intensive Care Society. Dr Mackenzie will be joined on the Group by a number of leading clinicians in this field from across Scotland.

Ms Sturgeon said:

“It’s important that we have adequate provision of ECMO across the UK. Evidence gathered by the expert group will help us reach decisions about increasing ECMO capacity in Scotland.

“However, it will take time to establish dedicated Scottish provision. Therefore I and Health Ministers across the UK have asked the UK Critical Care Group to advise us on what action requires to be taken in the short term to increase UK capacity to deal with the flu pandemic flu.”

ECMO provision costs in the region of around £100,000 per patient episode.

ECMO is used to treat respiratory or cardiac failure that is considered to have a reversible cause and is unresponsive to conventional intensive care procedures. In essence, ECMO takes over part of the body’s function to enable the heart and lungs to recover and heal.

ECMO is similar to a heart-lung bypass machine. The patient’s circulation is connected to an external pump and an artificial lung (oxygenator). A catheter placed in the right side of the heart carries blood to a pump, then to a membrane oxygenator, where exchange of oxygen and carbon dioxide takes place. The blood then passes through the tubing back to either the venous or arterial circulation. An anticoagulant is used to prevent the blood clotting.

Adults may receive ECMO for a variety of reasons including post cardiac surgery and the conditions that may cause Adult Respiratory Distress Syndrome (ARDS) for example sepsis. Common causes for ECMO treatment in neonates and children include meconium aspiration, cardiac and respiratory causes, infection, and congenital diaphragmatic hernia.

ECMO is a highly specialised technique demanding even higher levels of medical, nursing and technical/laboratory support than in Level 3 (ICU) facility. An ECMO service has to have access to a large range of skills including trained intensive care medical and nursing staff with specific expertise in ECMO, perfusionists, respiratory specialists, operating theatre support, laboratory services, physiotherapists and other physicians and surgeons as well as numerous other services.

Topics: ECMO, goverance, health care, UK Critical Care

Research Article - A Useful Tool in the Prenatal Diagnosis of Congenital Diaphragmatic Hernias and Eventrations

© 2009 by the American Institute of Ultrasound in Medicine
J Ultrasound Med 28:1365-1367 • 0278-4297

Paradoxical Motion

http://www.jultrasoundmed.org/cgi/content/abstract/28/10/1365

A Useful Tool in the Prenatal Diagnosis of Congenital Diaphragmatic Hernias and Eventrations

Christine Comstock, MD, Richard A. Bronsteen, MD, Amy Whitten, MD and Wesley Lee, MD

Division of Fetal Imaging, Department of Obstetrics and Gynecology, William Beaumont Hospital, Royal Oak, Michigan USA.

Address correspondence to Christine Comstock, MD, Division of Fetal Imaging, Department of Obstetrics and Gynecology, William Beaumont Hospital, 3601 13 Mile Rd, Royal Oak MI 48073 USA., E-mail: ccomstock@beaumonthospitals.com

Objective. The purpose of this series was to determine whether paradoxical motion of the diaphragm reliably identifies congenital diaphragmatic hernias (CDHs). Methods. Sonographic evaluation of diaphragmatic motion was attempted in all fetuses undergoing a targeted examination for findings suggestive of a possible CDH. During any respiratory motion or hiccupping, the posterior chest and abdomen were visualized in a coronal plane at the level of the descending aorta to evaluate ascent and descent of the hemidiaphragms. Normal motion was defined as descent of both during inspiration. Paradoxical motion was defined as descent of one hemidiaphragm and ascent of the opposite one during inspiration. If no breathing motion was observed during the examination, the results were termed "poor visualization." If there was poor visualization, the diaphragm was reevaluated at any return visits. In the second part of this study, diaphragmatic motion in 120 fetuses of at least 15 weeks’ gestational age without abnormalities was evaluated. The diagnosis of a CDH needed to be confirmed by pathologic examination or surgery. Results. No fetus without abnormalities showed paradoxical breathing. There were 15 fetuses who had a confirmed CDH and showed breathing during an examination. Fourteen of 15 had paradoxical motion; the fetus who did not had a very small defect containing a single loop of bowel. Thirteen fetuses had CDHs, and 2 had eventrations. Conclusions. Paradoxical motion is specific for CDHs and eventrations and can be seen as early as 17 weeks’ gestation.

Key Words: diaphragm • eventration • fetus • hernia • paradoxical breathing

Abbreviations: CDH, congenital diaphragmatic hernia

News Article - Children's Hospital Boston's Technology Development Fund Announces First Annual Awards

http://newsblaze.com/story/2009092811180200001.pnw/topstory.html

Published: September 28,2009

Children's Hospital Boston's Technology Development Fund Announces First Annual Awards

Awards Seek to Advance Promising Research into Potentially Life Saving Products

BOSTON, Sept. 28 /PRNewswire-USNewswire/ -- The Technology and Innovation Development Office (TIDO) at Children's Hospital Boston announced awards totaling $1.2 million to support the advancement of promising research into potentially life saving products. The awards support efforts that range from pharmaceuticals and diagnostics and medical devices to vaccines and tissue engineering.

The selected projects seek to produce a wide array of technologies including: new diagnostic test for appendicitis; novel pneumococcus vaccines, affordable to the developing world; ground breaking procedures for the repair of congenital defects; and eight other projects. "This fund is critical to advancing the development stage of Children's innovations, moving them closer to becoming new treatments and tests that will benefit our young patients, and patients worldwide," said Erik Halvorsen, PhD, director of TIDO. "We are excited to be pushing this process forward and have found the right combination of efforts by engaging industry experts on our advisory board to work along side us in identifying, evaluating and mentoring the projects chosen for these awards."

"The Technology Development Fund provides investigators with the support we need to translate our ideas and scientific discoveries into products that will advance patient care and improve safety," said Debra Weiner, MD, PhD, emergency medicine and award recipient. "This unique funding program creates a powerful collaboration between TIDO and the investigators, which provides critical financial resources and technology development expertise for early phase development of innovations that may not progress otherwise."

The next step involves pairing up investigators with members of the advisory board who will work with Erik Halvorsen and Monique Yoakim-Turk PhD, technology development manager, to guide the projects.

Below is the list of funded projects and investigators:

    --  Slow-release anti-angiogenic drug for treating eye diseases (Ofra Benny,
       PhD and Robert D'Amato, MD, PhD, Vascular Biology);
   --  Topical treatment of peripheral neuropathies (Gabriel Corfas, PhD,
       Neurobiology Program);
   --  Fetal tissue engineering to repair congenital diaphragmatic hernia
       (Dario Fauza, MD, Surgery);
   --  Semaphorin 3F as a treatment for prostate cancer (Elena Geretti, PhD and
       Michael Klagsbrun, PhD, Vascular Biology Program);
   --  Pediatric vision scanner (David Hunter, MD, PhD, Ophthalmology);
   --  Urine diagnostic markers of acute appendicitis (Alex Kentsis, MD,
       Division of Hematology/Oncology, Richard Bachur, MD, Emergency Medicine,
       and Hanno Steen, PhD, Proteomics);
   --  Packaging oxygen for intravenous injection (John Kheir, MD, Anesthesia,
       Perioperative and Pain Medicine);
   --  Novel pneumococcal vaccine (Ying-Jie Lu, PhD, and Richard Malley, MD,
       Infectious Diseases);
   --  Development of chemical chaperones to treat obesity and type 2 diabetes
       (Umut Ozcan, MD, Endocrinology);
   --  Hand-held solution to coordinate emergency department care (Debra
       Weiner, MD, PhD, Emergency Medicine);
   --  Development of an anti-metastatic peptide as a cancer therapeutic
       (Randolph Watnick, PhD, Vascular Biology).

"Children's has a rich history as one of the world's leading institutions in the translation of breakthrough discoveries into products that can benefit patients," said Alan Crane, general partner at Polaris Venture Partners and a member of the advisory board. "Children's is contributing to the acceleration of these efforts by providing critical funding and guidance necessary to progress early-stage discoveries."

The projects will be carried out over one year and will involve co-development partners, increasing the probability of receiving additional funding or corporate licensees to bring new products to market. "TIDO's approach is unique and certainly timely," said Beverly Teicher, PhD, vice president of oncology research at Genzyme Corporation and member of the advisory board. "The work that the mentors are doing now will not only educate the current mentees, but will also translate to the next generation of academic investigators, preparing them to move their discoveries toward clinical application."

In March, Children's launched its new Technology Development Fund, to advance promising early-stage hospital technologies. The external advisory board reviewed all projects submitted and recommended projects to fund based on a number of criteria, such as addressing an important, unmet medical need and for the allocated funds to have a significant impact on the development of the technology. For a listing of advisors and their affiliations, please click here.

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine and 13 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: www.childrenshospital.org/newsroom.

Volunteering at CHERUBS

CHERUBS has is the world's largest, oldest and most active CDH organization. Being such, we have a lot of work to do and a lot of families to help! We depend on our volunteers to do this. CHERUBS is completely run by volunteers - other CDH parents who chose to give back and help make a different and to help other CDH families. They dedicate their time and hearts freely and we appreciate them so much!

If CHERUBS has ever helped you - allowed you a place to talk or ask questions when you needed it. Helped you to make friends with other CDH parents. Supplied you with information during one of the worst times of your life. If we've done this and you are able to have some spare time to give back, please do so. This is a group effort and we need and welcome any CDH parent who wants to volunteer to help other CDH families!

Some of the Volunteer Positions at CHERUBS include:



Volunteer positions for those with a lot of time and dedication and a huge willingness to help the CDH community:

State & International Representatives - Our Reps are well... representatives of CHERUBS. They are our hearts at the local level, working with families and hospitals. They represent us at local get-togethers, events, fundraisers, conferences, etc. They match families together, visit parents in the hospital, plan local events. Some run their blogs or sites. They are the local faces of CHERUBS and what we do and what we stand for and this position is one that requires a strong moral compass, a lot of compassion for others going through CDH, a willingness to sometimes put their own CDH emotions and journey aside to focus on other families, courage to stand above innapropriate behavior and be a local leader at the support group level, professionalism and class to remember that you are representing a charity and that you are part of an international group, and mostly it requires a completely unselfish heart to give of yourself to others without going into the position wanting support for yourself. But the rewards are amazing.... knowing you were there for a CDH family in their darkest hour. Knowing you matched up 2 local families who can now depend on each other for support. Or watching a cherub meet another cherub for the first time at a get-together. It's amazing.

This volunteer position is one of the hardest at CHERUBS. It's easy for parents to sometimes lose focus on who they are supposed to be helping (other CDH parents). This position has a great title and a lot of responsibility, but it's not for everyone. It requires a dedication to CDH parents and to CHERUBS - since after all, that's who you are representing.

We are looking for 2 Co-Representatives for each state and country - 1 parent of a survivor, 1 grieving parent. We have a lot of positions to fill! If you would like to volunteer, please let us know!

*We highly recommend you read the Volunteer Checklist to make sure that you're ready to volunteer directly with other CDH parents.

Volunteers positions for those who want to help a larger scale, with a few hours a month to help and a lot of ideas and energy to contribute:

The following are all great committees that need more members:

Conference Committee - help plan our international conferences, find conference sponsors, find volunteers for the conference, help us at the conference, help set round table discussions and more.

Awareness Committee - help us to come up with, plan and execute many different projects to help promote CDH awareness. This includes helping us on our new Congressional Bill to help protect CDH Awareness from the trademark on "Congenital Diaphragmatic Hernia Awareness"

CHERUBS HOPE Totebag Committee - help us to find the items that we need to keep this totebag project going. Whether it's helping to make blankets or collect items for the bags or putting together handprint kits, or recruiting members and the public in donating to these bags, we have a lot of work going into these bags and need help! This project is a WONDERFUL project to help other CDH parents and to honor / remember your cherub while working with other CDH parents!

Fundraising Committee - help us come up with fundraising ideas and events and recruit participants!

Grant Committee - help CHERUBS to research and apply for grants for various projects.

Angel Ball Committee - local NC committee to plan the event, find sponors, volunteers and more for our Halloween Angel Masquerade Ball

Volunteer positions for those who want to help and work directly with other CDH parents but who only have a little bit of time to help:

*We highly recommend you read the Volunteer Checklist to make sure that you're ready to volunteer directly with other CDH parents.

Card / PM Volunteers - Volunteers that send out birthday, memorial, and holiday messages through our site

On Call Parents - Volunteers willing to listen to other CDH parents who are having a rough day and need to talk. You must be willing to publically post your phone number and e-mail address and to take calls at all hours of the day or night sometimes.

Volunteer positions for those who want to help but have very limited time:

Research Committee - this committee searches for the latest CDH research articles and submits them our Research Library. They also help to review our newsletter research section, our CDH Research Survey Results and test our research site. This is the perfect volunteer position for anyone who likes to do internet research!

Translation Committee - this committee translates our materials into other languages. We currently need translators for all languages who can help with the newsletters, baby book and more.

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!