Program:
CDH Research
- Budget:
-
$50,000
- Category:
-
Medical Research
- Population Served:
-
Infants/Babies (under age 5)
-
Children and Youth (infants - 19 years.)
-
Physically Disabled nec
Program Description:
<big><big>CDH
Research Fund – to pay for the $1000 a year cost of research database
hosting and to raise money for research organizations such as the
International CDH Study Group – unless a request is made to go a
specific hospital. The CDH Study Group is a collective group of over
30 hospitals around the world specializing in CDH research. We chose
to support groups like this one because we know that every cent will go
directly to research on Congenital Diaphragmatic Hernia and research
will be brooder and more advanced when collaborating with dozens of
hospitals and researchers together. <br />
</big></big>
Program Long-Term Success:
To find the cause, prevention and best treatments of Congenital Diaphragmatic Hernia so that no babies of the future are lost to this devastating birth defect.<br />
Program Short-Term Success:
<big><big>CDH
Research Site - 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 $1000 per year (thanks to a
grant from QuestionPro). 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. $1000 per year is
needed solely for the database design and secure hosting, which is
needed to follow federal privacy and HIPPA laws.</big></big>
Program Success Monitored by:
<ul>
<li>Annual Research Reports</li>
<li>Joint monitoring with the International CDH Study Group</li>
<li>NIH Reports</li>
</ul>
<br />
Program Success Examples:
CHERUBS has worked for 14 years to create the world's largest long-term CDH research study with over 2500 patients. In 2009, CHERUBS, a parent group, is now working with researchers and hospitals around the world through the CDH Study Group. This is the only known such collaberation of it's kind and it has opened a world of research opportunties for CDH.<br />
Program:
CDH Awareness
- Budget:
-
$25,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Females, all ages or age unspecified
-
Males, all ages or age unspecified
-
Adults
Program Description:
<p>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.</p>
Program Long-Term Success:
CDH has affected over a half million babies around the world since 2000, yet most members of the general population have never heard of this birth defect that is as common as Cystic Fibrosis, Spina Bifida and Multiple Schlerosis. CHERUBS has been working hard since 1995 to advocate for awareness of CDH and to bring more attention to this defect so that more research funds can be made available to help these babies. It is our goal that by the year 2015 at least 50% of the U.S. population will know what CDH is.
Program Short-Term Success:
<ul>
<li>A donation of $7 will sponsor 1 CDH Education Poster<br />
</li>
<li>A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons</li>
<li>A donation of $100 will sponsor a Balloon Release</li>
<li>A donation of $400 will sponsor 5000 CDH Awareness Brochures</li>
<li>A donation of $3000 will sponsor a billboard advertisement</li>
</ul>
Program Success Monitored by:
Public research surveys conducting every 3 years.<br />
<br />
Program Success Examples:
<ul>
<li>CDH families through CHERUBS and several other CDH organizations created and voted on the Official Congenital Diaphragmatic Hernia Awareness Ribbon, which is baby blue, pink and pale yellow with clouds. </li>
<li>CHERUBS and several other CDH organizations are fighting to keep "Congenital Diaphragmatic Hernia Awareness" off the USPTO registry and free for any CDH family, organization or researcher to use</li>
<li>CHERUBS web site receives over 10,000 hits per month, raising substantial awareness of CDH</li>
<li>CHERUBS and our members hold many events around the world to raise awareness of CDH</li>
<li>Several CDH organizations joined together with 1000's of CDH families around the world for the Day of Prayer and Education for Congenital Diaphragmatic Hernia on May 17, 2008, raising Global awareness of CDH</li>
<li>CHERUBS is working with several celebrities to bring more media attention and awareness to CDH</li>
<li>CHERUBS has dozens of other CDH Awareness programs currently being conducted to help raise awareness on many different levels<br />
</li>
</ul>
<br />
Program:
CDH Scholarships
- Budget:
-
$25,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Female Youth/Adolescents (14 - 19 years)
-
Male Youth/Adolescents (14 - 19 years)
Program Description:
<p><strong><strong>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.</strong></strong></p>
<p><strong><strong>With almost 3000 CDH families in our member, CHERUBS has quite a few adolescent survivors and siblings who are at, or approaching, college age. <br />
</strong></strong></p>
<p><strong><strong>Families can raise
money to give scholarships in honor / memory of their cherubs. </strong></strong></p>
<p><strong><strong>We hope to award our first scholarship in 2010.</strong></strong></p>
Program Long-Term Success:
<ul>
<li>To fund 5 $5000 scholarships to deserving candidates annually. </li>
<li>Through educating our children we hope that they will go out into the world and help raise awareness and research of CDH through their occupations, whatever they choose to become.</li>
<li>To help families struggling to overcome astronomical medical bills to provide education to their children.<br />
</li>
</ul>
<br />
Program Short-Term Success:
Program Success Monitored by:
CHERUBS CDH Scholarship Committee<br />
Program Success Examples:
This will be determined in 2010 when we award our first scholarship.<br />
Program:
CDH Family Assistance
- Budget:
-
$50,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Infants/Babies (under age 5)
Program Description:
<p>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.
</p>
<p>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. <br />
</p>
<p>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!</p>
<ul>
<li>$20 can cover 1 gift bag for a CDH family from Gabe's Gifts </li>
<li>$20 can cover 1 family's gas for a day </li>
<li>$50 will cover a gas card for a family going back and forth to the hospital </li>
<li>$500 can cover a plane ticket for 1 family member</li>
</ul>
<p>
</p>
Program Long-Term Success:
Providing families with a financial resource to help defer the cost of a having a baby born with CDH, whose medical bills can approach up to $1 million dollars.<br />
Program Short-Term Success:
Gabe's gifts will offer new parents the information and support items that they need during their babies' inital hospitalization.<br />
Program Success Monitored by:
CHERUBS Family Assistance Fund Committee<br />
Program Success Examples:
To be determined.<br />
Program:
CDH Support
- Budget:
-
$250,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Infants/Babies (under age 5)
-
Children and Youth (infants - 19 years.)
Program Description:
<p>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.</p>
<ul>
<li>$1 will cover 1 2-pocket folder </li>
<li>$1 will cover 1 copy of our Parent Reference Guide</li>
<li>$5 will cover 1 newsletter printing and US postage </li>
<li>$10 will cover 1 New Member Packet </li>
<li>$50 will cover our annual non-profit state registration fee </li>
<li>$50 will cover envelope costs for 1 year </li>
<li>$50 will cover our volunteer software for 1 month</li>
<li>$100 will cover staples, paper clips, glue, etc for 1 year </li>
<li>$100 will sponsor 1 hospital with CDH info for 1 year</li>
<li>$125 will cover web site hosting fees for 1 month </li>
<li>$300 will cover 1 local get-together</li>
<li>$400 will cover printing 5000 brochures </li>
<li>$500 will cover outside programming fees </li>
<li>$2000 will cover non-newsletter postage fees for 1 year</li>
<li>$3000 will cover 1 newsletter printing and mailing</li>
<li>$5000 will cover 1 international member conference</li>
</ul>
Program Long-Term Success:
<ul>
<li>To provide information and support to every family diagnosed with Congenital Diaphragmatic Hernia. </li>
<li>To offer local assistance and international conferences. </li>
<li>To have a staff of on-call personal to assist families, conduct research and raise awareness on a full-time basis. </li>
<li>To have a research time on staff. To have CDH informational materials in every hospital in the U.S. </li>
<li>To create and distribute CDH educational videos to every hospital</li>
<li>To create and distribute CDH books</li>
<li>To create and distribute CDH Parent Info Packets to every family diagnosed</li>
<li>To hold an international conference every year</li>
<li>To hold state get-togethers in every state annually</li>
<li>To offer local support group meetings for families</li>
<li>To maintain and enhance our web site and the free services that it offers to our members and the public</li>
<li>To continue to cover printing and postage costs of our materials</li>
<li>To hire web site programmers when needed</li>
<li>To continue to offer information and materials to the media about CDH<br />
</li>
</ul>
<br />
Program Short-Term Success:
Has already been achieved as of 1995 - no CDH family has to deal with this devastating birth defect alone. <br />
Program Success Monitored by:
CHERUBS Board of Directors.<br />
Program Success Examples:
CHERUBS has been successfully providing CDH information, research and support to the CDH community since 1995.<br />