Medical Research

Cherubs The Assoc of Congenital Diaphragmatic Hernia Research

  • Wake Forest, NC
  • http://www.cdhsupport.org

Mission Statement

CHERUBS was created to help families of babies born with Congenital Diaphragmatic Hernia by providing support services, promoting research and raising awareness.

Main Programs

  1. CDH Research
  2. CDH Awareness
  3. CDH Scholarships
  4. CDH Family Assistance
  5. CDH Support
Service Areas

Self-reported

International

CHERUBS currently has members in all 50 states and in 60 countries.  We are open to all family and medical care providers of children born around the world with Congenital Diaphragmatic Hernia.

ruling year

1995

Principal Officer since 1995

Self-reported

Mrs. Dawn M. Torrence Ireland

Keywords

Self-reported

diaphragmatic hernia, congential diaphragmatic hernia, cdh, congential diaphragmatic hernia research, congential diaphragmatic hernia awareness, congential diaphragmatic hernia support, congential diaphragmatic hernia advocacy, cdh research, cdh awareness, cdh advocacy, cdh support, birth defect, baby, babies, birth defects, lungs

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Also Known As

CHERUBS

EIN

56-1916661

 Number

4275967556

Physical Address

152 South White St Upstairs Office Suite

Wake Forest, NC 27587

Contact

Cause Area (NTEE Code)

Pediatrics Research (H98)

Birth Defects, Genetic Diseases Research (H20)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

CDH occurs in approximately 1 in every 2,500 births. Globally, over a half million babies have
been born with CDH since 2000.  50%
of babies born with CDH do not survive.   The
cause of CDH is not known. Diaphragmatic Hernia like the other parents who have walked this path. It is a very emotional, stressful, and physically demanding time. Just knowing you are not alone can make all the difference in the world. CHERUBS was founded so that no family has to go down this path alone. No one knows what life is like with a child born with Congenital Diaphragmatic Hernia like the other parents who have walked this path. It is a very emotional, stressful, and physically demanding time. Just knowing you are not alone can make all the difference in the world. CHERUBS was founded so that no family has to go down this path alone. No one knows what life is like with a child born with Congenital

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

CDH Research

Not available

Category

Medical Research

Population(s) Served

Infants/Babies (under age 5)

Children and Youth (infants - 19 years.)

Physically Disabled nec

Budget

$50,000.00

Program 2

CDH Awareness

CDH
Awareness Fund – this fund will help raise awareness of Congenital
Diaphragmatic Hernia through balloon releases, giving away free CDH
ribbon buttons and brochures and other items.  It will also cover
advertising costs, billboards, video production and much more.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Females, all ages or age unspecified

Males, all ages or age unspecified

Adults

Budget

$25,000.00

Program 3

CDH Scholarships

CDH
Scholarship Fund – only for CDH patients and their siblings.   CHERUBS wishes to further the education of those affected by CDH by awarding scholarships to CDH patients and siblings who show educational promise and economic need.  Our scholarship fund is only for immediate family members of those dealing with CDH - we do not fund scholarships for medical staff or friends.

With almost 3000 CDH families in our member, CHERUBS has quite a few adolescent survivors and siblings who are at, or approaching, college age.   

Families can raise
money to give scholarships in honor / memory of their cherubs.  

We hope to award our first scholarship in 2010.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Female Youth/Adolescents (14 - 19 years)

Male Youth/Adolescents (14 - 19 years)

Budget

$25,000.00

Program 4

CDH Family Assistance

CDH
Family Assistance Fund – A majority of this fund will go to help
families with travel expenses such as airline tickets and gas.  It will
not go to lodging because CHERUBS highly recommends the *free* lodging
available at Ronald McDonald Houses.  Families will submit confidential
applications to assistance and a committee will consider each request. 

Our
goal is to make sure that all CDH families can afford to get to their
cherub’s medical center and have a place to stay so that they can
concentrate on their children instead of travel worries.   We hope to
assist a family through this fund by this fall. 

The
remaining small percentage of this fund will go to Gabe’s Gifts, a new
program that helps new and expectant families by supplying them with
items needed.  This project will start by September, 2009!

$20 can cover 1 gift bag for a CDH family from Gabe's Gifts

$20 can cover 1 family's gas for a day

$50 will cover a gas card for a family going back and forth to the hospital

$500 can cover a plane ticket for 1 family member

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Infants/Babies (under age 5)

Budget

$50,000.00

Program 5

CDH Support

CDH
Family Support Fund – this fund covers all support services, including
our web sites, newsletters, conferences, New Member Packets,
get-togethers and other general operating costs.  CHERUBS does a lot
for CDH families and the CDH community and we incur quite a few costs
during so.  Just 1 newsletter mailing is now over $3000 for printing
and posting with so many members.  Our conferences are also
expensive.   Our monthly expenses are several hundred dollars for ink,
postage, web site hosting fees, fax number, etc.  It takes a lot to
fund an organization with almost 3000 members.  And all of our services are FREE so we do charge
membership fees.  Only 2% of our members donate annually so we depend
on public donations quite a bit. And the occasional grant as well.

$1 will cover 1 2-pocket folder

$1 will cover 1 copy of our Parent Reference Guide

$5 will cover 1 newsletter printing and US postage

$10 will cover 1 New Member Packet

$50 will cover our annual non-profit state registration fee

$50 will cover envelope costs for 1 year

$50 will cover our volunteer software for 1 month

$100 will cover staples, paper clips, glue, etc for 1 year

$100 will sponsor 1 hospital with CDH info for 1 year

$125 will cover web site hosting fees for 1 month

$300 will cover 1 local get-together

$400 will cover printing 5000 brochures

$500 will cover outside programming fees

$2000 will cover non-newsletter postage fees for 1 year

$3000 will cover 1 newsletter printing and mailing

$5000 will cover 1 international member conference

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Infants/Babies (under age 5)

Children and Youth (infants - 19 years.)

Budget

$250,000.00

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    Our goals at CHERUBS are to:

    1. CDH Support - support families affected by Congenital Diaphragmatic Hernia through their child's fight against CDH and after.

    2. CDH Research - help the research community to find the cause, prevention and best treatments of CDH

    3. CDH Awareness - make Congenital Diaphragmatic Hernia as well known as Cystic Fibrosis, Spina Bifida and other health issues with similar occurance rates
  2. What are the organization's key strategies for making this happen?
    We are able to reach our goals by:

    1. CDH Support - continuing to support families through free services such as our CDH HOPE totebags, forums matching programs, conferences, get-togethers, Hospital Angels and more.

    2. CDH Research - continue to fund research grants, request more NIH funding and encourage participation in CDH Research studies

    3. CDH Awareness - continue to raise awareness on an international level through family programs, the media and grassroots efforts
  3. What are the organization's capabilities for doing this?
    CHERUBS is the world's largest charity for Congenital Diaphragmatic Hernia, assisting over 4400 families in 60 countries. We offer the most services, the most programs and the most hope than any other charity in history for our cause. With 3 Boards (Directors, Medical, Parent Advisory), 75 volunteers and an international support system, we are very capable of meeting all our goals.
  4. How will they know if they are making progress?
    Our ability to achieve our goals is indicated in the vast amount of work we done in the past 18 years. From starting at a kitchen table with 2 members and a typewriter to becoming an international power house for those affected by CDH, we have proven that we not only set high goals, but we achieve them. We have even inspired 3 spin off charities for CDH and have helped many other charities to get established.
  5. What have and haven't they accomplished so far?
    In just the past 4 years alone we have:

    * Introduced a Bill and 2 Resolutions on Capital Hill (one passed unanimously by the Senate)
    * Given over 30 television interviews and countless newpaper and magazine interviews
    * Increased our annual donations by almost 10 fold
    * Hired our first employee
    * Opened up a brick and mortar office
    * Invited to speak at an international conference of CDH Researchers
    * Started to work on a mutual CDH Research Database project with 3 research centers
    * Held several international conferences for CDH families
    * Assisted over 500 newly diagnosed CDH families
    * Sent out over 500 care packages for newborn CDH babies
    * Got April 19th proclaimed as a day of awareness in 26 states
    * Successfully fought a trademark on "Congenital Diaphragmatic Hernia Awareness" and got it removed
    * Mentored several other charities
Service Areas

Self-reported

International

CHERUBS currently has members in all 50 states and in 60 countries.  We are open to all family and medical care providers of children born around the world with Congenital Diaphragmatic Hernia.

Social Media

Blog

Funding Needs

$1 (1 folder) $1 (1 Parent Reference Guide) $5 (1 newsletter) $7 (1 Poster) $10 (1 New Member Packet) $20 (1 gas card) $20 (1 gift bag) $20 (100 CDH Buttons) $50 (NPO fee) $50 (envelopes) $50 (1 month software) $100 (1yr office supplies) $100 (Adopt a Hospital) $100 (Balloon Release) $125 (site hosting 1 month) $300 (local get-together) $400 (5000 brochures) $500 (site programmer) $500 (plane ticket) $1000 (Research Site 1yr fee) $2000 (1 yr postage) $3000 (newsletter mailing) $3000 (billboard) $5000 (member conference) $5000 (scholarship)

photos




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Financials

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CHERUBS- THE ASSOCIATION OF CONGENITAL DIAPHRAGMATIC HERNIA RES
Fiscal year: Jan 01-Dec 31

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Operations

The people, governance practices, and partners that make the organization tick.

Cherubs The Assoc of Congenital Diaphragmatic Hernia Research

Leadership

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Principal Officer

Mrs. Dawn M. Torrence Ireland

BIO

The mother of a child born with CDH, Ms. Ireland founded the organization in 1995 after finding no support or information on this birth defect.  With 6 and a half years of experience as the parent of a child with CDH with significant medical issues and 14 years of experience as a grieving parent, Ms. Ireland can uniquely identify with most CDH families based not on textbooks but on her own personal experiences.  Ms. Ireland has 18 years experience in running a non-profit organization, 10 years experience in running her own business and with a 4.0 in college, she majored in business, web design and medical assistance to further her goals in running CHERUBS to the best of her ability.  She is also holds a certification in Non-Profit Leadership from Duke University. Ms. Ireland began the world's first and largest long-term CDH research study in 1995, that continues still.   Ms. Ireland has worked for over a decade to create and maintain working relationships with CDH researchers and organizations around the world and is a founding member of the Alliance of Congenital Diaphragmatic Hernia Organizations.

STATEMENT FROM THE Principal Officer

"CHERUBS was founded in 1995 so that no families had to deal with CDH alone.  We started with 2 members and a typewrite and now, 18 yrs later, we have grown to help families around the world.  The satisfaction that we receive when we know that a newly diagnosed family has the information, support and resources that they need is priceless."

Governance

BOARD CHAIR

Dawn M. Williamson

No Affiliation

Term: Feb 1995 -

BOARD LEADERSHIP PRACTICES

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BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


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CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


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ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


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BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


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BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?