2013 so far for CHERUBS

2013 so far for CHERUBS:

* Senate Resolution for April 2013 as National CDH Awareness Month passed UNANIMOUSLY
* House of Resolution for April 2013 as National CDH Awareness Month currently in committee with new Co-Sponsors
* Capitol Hill visit for CDH Research Fund with plans underway!
* April 19th Marches and Events in Washington DC, Chicago, NYC, Seattle, Portland, Peoria, St Louis, Gainesville, Philadelphia, Denver, Phoenix, Las Vegas, the UK, Brazil
* Over $20,000 raised for CDH Research
* Over 12,000 Facebook Fans
* Over 4400 members
* Represented the CDH Community at the 2013 American Pediatric Surgical Association conference
* Represented CDH families at the 2013 DHREAMS meeting
* New FB app for our CDH Family Forums
* New members to our Medical Advisory Board
* MANY local events and fundraisers
* New weekly e-newsletter
* Dozens of TV and newspaper interviews
* 6 new videos
* New CDH Fundraising Kit
* Over 150 totebags sent out to new and expectant CDH families
* Nominated for a Health Advocacy Award and won several awards for being an outstanding non-profit organization
* We have visited many cherubs and families in the hospital and unfortunately gone to funerals as well. We are not just an "on-line support group", we are working hard to make a REAL difference not just in funding research and raising awareness but by being there for the families that need us.

Upcoming still for 2013:

* First ever joint International Medical & Family Conference this July in Boston with attendees from 5 countries so far
* Speaking at the CDH Community at the 2013 International CDH Study Group Conference in Holland in June
* 2 Scholarships for High School Seniors (Cherubs or siblings)
* MANY local get-togethers, picnics and fundraisers
* 2013 Stories of Cherubs Book featuring over 500 cherubs
* 2013 CDH Magazine
* New web site
* On-line CDH RESEARCH DATABASE!
* 2013 Masquerading Angels Ball in Raleigh in October
* 2013 CDH Research Raffle
* 2013 CDH Research Grant Facebook Contest
* UK CDH Ball
* UK Member Get-Together

And wait until you see what we're doing in 2014!!!

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. 1600 babies are born with CDH every year in the United States. Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Like what we do? Please share this status!

Please donate to help us fund all of this and so much more! Donate via the tab on our FB page or at http://www.cdhdonations.org/

Contact Tracy about volunteering at volunteer@cherubs-cdh.org

Contact Melissa about holding a fundraiser at mlarrison@cherubs-cdh.org

Learn more about CHERUBS at http://www.savethcherubs.org/

CHERUBS 2010 Year In Review

What a year at CHERUBS!  Full of highs of accomplishing so much for the CDH community, yet full of lows of losing so many babies.   2010 has been a very eventful year (more links to details coming soon!):

January:

• Our 2009 Financials show that our operating costs for last year were just 19%!  81% of our funds went to directly helping CDH families!
• New Social Media CDH Awareness campaign begun
• First Save the Cherubs Photo Shoot
• Congenital Diaphragmatic Hernia Baby Books go to print
• Site redesign begun

February:

• CHERUBS celebrated 15 years as a non-profit organization, helping over 3200 families.
• Valentine's Day Fundraiser

March:

• Save the Cherubs Campaign started 
• "I'll Never Let You Go" song and CDH Awareness Video Released
• Work begun on the CDH Research Bill, with immediate support of 2 Senators.  2 more would pledge their support in the next few months. 
• CHERUBS walks in the Great Human Race
• New CDH Awareness Shop Opened
• 831 Photography Fundraiser in memory of Drew Lewallen

April:

• After 2 years, CHERUBS defeats the trademark on "Congenital Diaphragmatic Hernia Awareness" with the help of 4 pro bono lawyers, several other CDH non-profits and groups and the support of 1000's of CDH families.
• Save the Cherubs & Sroka family on ABC News
• CDH Awareness Road Rally in SC
• Addison's Lemonade Stand Fundraiser
• Special Needs Conference in Ohio
• CHERUBS in Triangle March for Babies
• Annual Pennsylvania Member Picnic
• Green Family in Triangle March for Babies in Maryland
• "Congenital Diaphragmatic Hernia Awareness Daily" slogan created.
• More Save the Cherubs photo shoots

May:

• 2010 International CDH Conference held in Orlando, FL
• CHERUBS represents the CDH Community at the American Pediatric Surgical Association Conference
• CHERUBS represents the CDH Community at the American Pediatric Surgical Nurses Association Conference
• First "Parade of Cherubs"
• More Save the Cherubs photo shoots
• Avon Fundraiser
• Scentsy Fundraiser
• Myers Family in Triangle March for Babies in Texas
• Tupperware Fundraiser 
• Miche Bag Fundraiser
• New CDH Fundraiser site created for families wanting to hold events in honor / memory of their cherubs

June:

• NC CHERUBS Zoo Trip took place at the Greensboro, Zoo
• More Save the Cherubs photo shoots
• Save the Cherubs & Aaron Younce in the news
• CHERUBS support CDH charities Real Hope for CDH & the Olivia Raine Foundation in Chase Giving contest
  

July:

• Work on new CDH Research Database begun
  
• The World's First CDH Awareness Billboard
• Oz Kidd-Ward CDH Scholarship Fund created
• More Save the Cherubs photo shoots
• Larrison family CDH Hope Totebag item drive in memory of Hanna Rae Rose Larrison
• Navy sailors at Norfolk put together 100 handprint kits for CDH Hope Totebags in memory of Hanna Rae Rose Larrison
• CHERUBS members take "Vote for Cherubs" photos

August:

• CHERUBS wins $30,000 in the national APX Gives Back charity competition, coming in 2nd place and gathering 1000's of votes.
• Soap Star Patsy Pease appeals for votes for CHERUBS
• Newspaper Interviews 
• 10 annual CHERUBS Ohio Member Picnic
• More Save the Cherubs photo shoots
• CHERUBS made public Non-Profit retroactive to 2007

September:

• Our APX check award ceremony press conference raised more CDH Awareness
• APX Contest Within Contest
• 31 Party Fundraiser for Oz Kidd-Ward Scholarship Fund 
• Work on new CDH Forums begun
• Multiple newspaper interviews on APX contest
• CDH Research Committee works over time on research article
• CHERUBS & CDH represented in Fetal Hope March in NC in memory of Zoe Fisher

October:

• 2010 Masquerading Angels Ball
• Trick-or-Treat for CHERUBS
• TV interviews for Angel Ball raise awareness
• Multiple newspaper interviews for Angel Ball
• Radio Awareness on 96Rock
• Roller Derby Fundraisesr for Oz-Kidd Ward Scholarship Fund
• Blowing Rock Fundraiser for Oz-Kidd Ward Scholarship Fund
• Vote for CDH Video created featuring videos submitted by members
• Baby Shower in honor of Aaron Younce
• Fosythe Hospital Walk to Remember
• Tastefully Simple Fundraiser
• Hot Air Balloon Ride Raffle Fundraiser

November:

• CHERUBS raises CDH Awareness to over half a million people Raleigh Christmas Parade
• 2nd Annual Christmas With Kasey Fundraiser
• CHERUBS Holiday Shopping Ebay Fundraiser
• CHERUBS in Televised Parade Video on 2 TV Stations
• Angel Ball Committee Chuck E. Cheese Family Get-Together
• Enamel CDH Awareness Ribbons created
• Over 200 personalized CDH Awareness Ribbons created

December:

• CHERUBS represented by Floyd family in Mississippi Christmas parade
• CHERUBS work with 9 other charities in Pepsi Refresh
• Over 35 celebrities Tweet for CHERUBS in Pepsi Refresh
• CHERUBS Press Release picked up on over 4000 news outlets
• 2011 CDH Cherubs Calendar
• 2011 Save the Cherubs Calendar 
• 2010 National Children's Memorial Day Tribute
• Breaths for Brielle Cha Cha for CHOP Zumbathon
• Over 250 CDH Hope Totebags mailed out over the year
• Over 75 Save the Cherubs CDH Awareness poster photographs created
• Board of Directors adds 2 new members
• CHERUBS reaches 3500 members

We know we haven't listed everything - please e-mail us your events, photos, etc to membership@cdhsupport.org

It's been a great year for CHERUBS!   Thank you to all of our donors, sponsors, volunteers, members and supporters for helping us to make this the best, most productive year yet!

If you'd like to make a tax-deductible end-of-year donation to CHERUBS, it would be much appreciated and put to very good use.  On-line donations can be given at http://www.cdhdonations.org   Our IRS and financial information can be found at http://www.cherubs-cdh.org/financial.php

Everyone at CHERUBS wishes you a happy, healthy and blessed New Year!!!

End of Year 2009 Donations to CHERUBS

Happy New Year!!!!!

As we wrap up yet another year, we would like to remind everyone that it's that time of year again - time to make your end of year donations to receive tax credit on next year's returns!

We know that 2009 has been a very hard year for most financially. We know that donations are hard to make and as such, you should well research every charity that you donate to. Some must knows about CHERUBS as you contemplate which charity to support with your hard earned money:

• All donations made to CHERUBS, both cash and in-kind are tax-deductible. CHERUBS has been a 501(c)III non-profit organization since 1995.
  

• Donations made by December 31st are tax-deductible for 2009's tax return.
  

• In-kind donations, including those made to our CDH HOPE Totebag project, are tax-deductible.
  

• Donations can be made in honor or in memory of someone. Donations made in lieu of flowers at memorial services are also deeply appreciated.
  

• Donations are listed in our newsletter and families receive donation acknowledgements when someone sends a gift in honor or in memory of their cherub.
  

• Donations are used to directly assist families affected by CDH through 5 different funds (listed below). Donations made to specific funds can be made by clicking on the fund name below:

• 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, etc. It takes a lot to fund an organization with almost 3000 members. Remember, no one at CHERUBS gets paid and we have no office so every penny directly helps CDH families. And all of our services are FREE so we do charge membership fees.
  

• CDH Research Fund – to pay for the $1000 a year cost of research database hosting, programmer and to raise money for research organizations such as the International CDH Study Group. 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.

• 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 Spring, 2010. The remaining small percentage of this fund will go to the CDH HOPE Totebag Project, a new program that helps new and expectant families by supplying them with items needed during their cherub's hospital stay.
  

• CDH Awareness Fund – this fund helps to 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.
  

• CDH Scholarship Fund – for CDH survivors and siblings. Families can raise money to give scholarships in honor / memory of their cherubs. We hope to award our first scholarship in 2010.

• Donations can be made on-line on our web site through PayPal.com, a secure site that we've used for over 10 years for donations. http://www.cdhsupport.org/donate/index.php PayPal accepts all major credit cards from around the world.
  

• Donations can be made by mail through check or money order (U.S. currency only please) made out to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587
  

• CHERUBS never charges families for our services, materials or totebags. Our membership is free and always has been. Against the advice of accountants, auditors and other non-profit leaders, we have resisted mandatory subscription fees or charging for entrance into our forums or events. We have asked for members to make annual donations if they can afford to do so but it is never required. We want every CDH family who needs help to be able to freely access it.
  

• CHERUBS currently does not receive any grant funding. Our charity subsists solely from donations and fundraisers.
  

• CHERUBS has very little overhead with no office, donated phone lines and internet and no utility bills. But monthly expenses still add up quickly with 3000 members to serve.
  

• Only 2% of our members donate annually, with less than .5% volunteering. We depend on public donations greatly to keep our services and charity running.
  

• Donations make possible our annual CDH Conference, our newsletter, our web sites, our CDH HOPE Totebags, awareness materials, postage fees, awareness events and our 5 Funds. We do a whole lot of good on less than $30,000 a year in donations!
  

• Your donation will never go to pay anyone's salary. CHERUBS is run solely by volunteers and always has been. Our President has logged over 25,000 hours of volunteer work at CHERUBS in the past 15 years and our other volunteers have donated 1,000's of hours as well to help families affected by CDH.
  

• We do not pay lawyers, accountants, marketing executives or other 3rd parties and try to find sponsors and volunteers for in house needs such as web design, programming, graphic art, etc. We are blessed to have many amazing volunteers and pro bono professionals who want to help CDH families.
  

• CHERUBS has been audited and publicly files financial reports every year on our web site as well as with GuideStar.com - so you can rest assured where your donation money goes.
  

• CHERUBS is a GuideStar Exchange Partner in Trust recognized charity.
  

• CHERUBS posts our 990 tax returns and our financial reports - to show how much money in donations that we receive - and where your donations are spent. In detail. Very few charities do this, as by law it's only required to show people our tax returns (and only if they ask). CHERUBS has an open book policy when it comes to our financial info and our missions. We believe in high ethics and honesty and making sure that our members, and the public, know what we stand for.
  

• CHERUBS never "filters" donations. We do not serve as a bank system for donors to channel money to other institutions and use those donations as a marketing ploy for our charity. We encourage members to donate directly to hospitals and other charities themselves - since they are also non-profits. Credit should be given to those who worked hard to fundraise and raise awareness - the families. That said - if you'd like to donate directly to specific CDH center, we highly encourage you to do so and ask that you do not donate to them indirectly through us. That just makes more paperwork for both charities and takes the appreciation from the true donor - you! We would be happy to help you locate a contact person to accept your donation.
  

• CHERUBS never "banks" donations. Our donations are used immediately to serve the CDH community, instead of sitting in an account doing no one any good except collecting a little bit of interest. By law, charities cannot "save" large amounts of funds as the entire mission of any charity is to serve others.
  

• CHERUBS has never used a cent of donation money for any lobbying, trademarks, lawyers fees, or other government or legal issues. We make sure that every penny donated to our charity directly helps CDH families, not politics or special interests.
  

• CHERUBS is a grassroots charity run by a large array of those affected by Congenital Diaphragmatic Hernia. Our Board of Directors includes CDH parents, grandparents, survivors, nurses, doctors and the world's top CDH researchers. No other charity in the world has such a respected, educated or experienced group of leaders who care so much about the CDH community.
  

• CHERUBS has been a non-profit for 15 years. We are not a fly-by-night organization. We are the world's first and largest charity for Congenital Diaphragmatic Hernia with over 3000 members in 38 countries and all 50 states. We are a trend-setter in the services that help families affected by CDH, leading the way for other groups and newer charities who have followed in our footsteps. We will continue to lead until Congenital Diaphragmatic Hernia is no more. We are devoted to finding the cause, prevention and best treatments for CDH.
  

• CHERUBS is a founding member of the Alliance of Congenital Diaphragmatic Hernia Organizations, dedicated to work together with integrity on one mission - helping CDH families.
  

At CHERUBS, we know there are a lot of charities out there who are equally as worthy of your time and donation. We appreciate your consideration and your support of those affected by Congenital Diaphragmatic Hernia and hope that you will choose CHERUBS as the recipient of your kindness so that we can continue to help CDH families around the world.

15 Easy Ways That You Can Help CDH Families!

We have a lot of new projects and funds going on at CHERUBS this summer! And we really need some help! Please take a few minutes to look over this list to see if you can help. Simply volunteering 5 minutes of your time or $1.00 to help with a project really does make a big difference! By working together we can help so many families affected by Congenital Diaphragmatic Hernia!

1. CHERUBS HOPE Totebag Project - http://www.cdhsupport.org/donate/hope.php

- Donate just $1.00. If all 3000 CHERUBS members or all 6000 CHERUBS at Cause.com members donated $1 each, we could provide 100's of totebags for new and expectant CDH parents with all the information and support that they need to get through those rough first days.

- Do you quilt, crochet or knit? We need baby blankets for these totebags! We also need baby hats and booties.

- Check or homes and offices, we need lots of (new) items that you may have laying around;

* pens
* notebooks
* disposable cameras
* footprint and handprint kits
* teddy bears
* newborn button-up shirts
* small bottles of lotion or hand sanitizer
* gas cards
* small picture frames
* chapsticks
* CDH awareness bracelets
* CDH awareness ribbon buttons
* See our site for a complete list.

2. Kid's CDH Book

- We are putting together a kid's book and video and we need your kids' help! We are looking for videos of children explaining what CDH is in their own terms. All videos will be included in the video project and the best video (voted on by our members) will be turned into a kid's book. Submission deadline is August 20th! You can e-mail your videos to cdhcherubs@yahoo.com

- We are looking for a publisher for this book. If you can help or know someone who can, please contact us.

3. CHERUBS CDH Baby Book

- We are putting the finishing touches on our new Baby Book for Cherubs! We all know too well that the "normal" baby books do not apply to CDH kids so CHERUBS has created a special baby book. This book will include your "typical" baby book stuff (photos, handprints, family tree, etc) but it will also include information about CDH, medical terms, your child's medical history, journals, contact information, medication lists and much more.

- We need kid's drawings for this book! Please mail them to dawn.williamson@cdhsupport.org

- We need specific photos for this book! We are particularly looking for photos that show clear images of cherubs during medical procedures; ECMO, EXIT to ECMO, Oscillating vent, feeding tubes, etc. These will be used to help explain procedures to new parents.

- We also need items for these books, which will go out to all new and expectant parents in the CHERUBS HOPE totebags! We need; 1.5" white view binders, business card sheets (3 hole for inclusion in the binders) and photo sheets (3 hole for inclusion in the binders).

4. Adopt A Hospital Program - http://www.cdhsupport.org/donate/hospitaladopt.php

- Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

- How does it work? You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub. CHERUBS Adopt A Hospital Care Package Includes; 1 copy of "Stories of Cherubs" Volume I, 1 copy of "Stories of Cherubs" Volume II, 1 CDH awareness poster, 20 Parent Reference Guides, 40 CHERUBS CDH Info Brochures, 40 CDH Awareness Ribbon Pins, 10 copies of our latest newsletter

- We have a lot of hospitals still needing to be adopted! For a complete list of those already adopted and to donate for an adoption, please visit http://www.cdhsupport.org/donate/hospitaladopt.php

5. Change for Cherubs CDH Research Project

- Starting now to October 31st we are encouraging members to empty their piggy banks, pockets and coin jars to college change to help us fund CDH research.

- On Halloween we encourage kids to dress as cherubs and trick-or-treat for change instead of candy. It's healthier and for a good cause!

6. CHERUBS Angel Ball Baskets - http://www.cherubsangelball.org

- Our annual Angel Ball will be held on October 30th in Durham, NC. We encourage all of you to come and attend. Money raised for CHERUBS will go to our CDH Family Support Fund.

- We need baskets and other items for our silent auction! We encourage members to donate baskets in honor or in memory of their cherubs. Last year we had dozens of baskets in many different themes. This year we hope to have over 50 baskets.

- We are also looking for celebrity autographed items to auction off. If you can help us to contact celebrities or can donate items, please contact us.

7. Volunteer - http://www.cdhsupport.org/volunteers/index.php

- We are about to revamp our entire volunteer system and will have a lot of empty volunteer positions! We especially need State & International Representatives. If you can help, please e-mail us at volunteer@cdhsupport.org

8. Printing

- We print A LOT at CHERUBS. Baby books, Parent Reference Guides, newsletters, programs, letters.... we go through a lot of paper and ink here at our office. We desperately need a printing company to sponsor us and all of our projects. If you can help or know of a company that can help, please contact us.

- We also need donations of ink for our hp LaserJet 4600n printer

9. Sign the Petition - http://www.ipetitions.com/petition/cdhawareness

- Yes, we're still fighting the trademark on "Congenital Diaphragmatic Hernia Awareness"! We've handed over the fight to our (pro bono) lawyers so we can concentrate on all of our other amazing projects but we are still collecting signatures. We have over 6000 so far but our goal is 10,000! Please sign and recruite your family and friends to sign as well. This is too important to not participate in - our children and future CDH babies are counting on us to protect CDH awareness!

10. Donate to CHERUBS - http://www.cdhsupport.org/donate/index.php

- CHERUBS does not charge membership fees or hire employees. We subsist completely off of donations and fundraisers. All donations are tax-deductible and very much needed and appreciate. Every single dollar helps us to help CDH families.

- We have 5 different funds to help CDH families, all of which need donations:

• CDH Family Support Fund
• CDH Research Fund
  
• CDH Family Assistance Fund
• CDH Awareness Fund
• CDH Scholarship Fund

- Please donate directly through our web site at - http://www.cdhsupport.org/donate/index.php

11. Participate in CDH Awareness events and Fundraisers!

- See what's happening and what current events and projects are going on by visiting our forums. http://www.cdhsupport.org/members/viewforum.php?f=184

- Join in on our awareness projects. http://cdhsupport.org/awareness/

- Consider holding an event in your town! From something small such as a balloon release to participating in our Change for Cherubs or holding something huge such as a golf tournament, there are lots of projects parents can do to honor their cherubs.

12. Join in our forums. http://www.cdhsupport.org/members

- Meet other parents and offer support while gaining knowledge and support also! We have an amazing CDH community that really works together to help families. Our forums are safe, friendly and a wonderful place to come talk to people who truly know what life is like dealing with CDH.

13. Start a Firstgiving Page in Honor / Memory of your cherub - http://www.firstgiving.com/10125

- Firstgiving.com offers a FREE web portal to raise money for your favorite charity (which is hopefully CHERUBS!). You can set up a page with your cherub's photo and information and people can donate in his/her honor or memory and leave comments as well.

- This is great for birthdays, angelversaries, holidays and other events! You can invite your family and friends to participate. Often, family and friends want to help but don't know what to do - this gives them an opportunity to do something.

14. Wear Your Awareness! - http://www.cafepress.com/cherubs

- CHERUBS offers literally 1000's of CDH awareness items through our store at http://www.cafepress.com/cherubs We have shirts, sweatshirts, onesies, bibs, dog shirts, bumper stickers, clocks, calendars, books, cards and so much more!

- Our items are marked only slightly over production costs so CHERUBS makes less than $1.00 on the sale of most of our items. Our goal is to keep the prices low so that you can buy more and raise more awareness!

15. Refer CDH parents to CHERUBS - http://www.cdhsupport.org

- Know of other CDH families? Help to gain the most CDH information possible by joining the world's largest and most productive CDH organization, CHERUBS! We have the latest CDH Research information as well as the largest long-term study database. We have over 3000 other CDH families and doctors to talk to and gain support and knowledge. We also have get-togethers and conferences to meet families face-to-face and learn directly from CDH experts. Our goal since 1995 is to support all CDH parents, raise awareness and promote and conduct CDH research - and we've been very, very busy doing that and more for 14 years. And it's all FREE for CDH families!


These are just a few of the projects that we have going on at CHERUBS! Drop by our site at http://www.cdhsupport.org to see how we're helping families affected by Congenital Diaphragmatic Hernia

Dawn Williamson

CHERUBS President & Founder

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

3650 Rogers Rd #290

Wake Forest, NC 27587

919-610-0129

dawn.williamson@cdhsupport.org

http://www.cdhsupport.org

http://www.cdhresearch.org

http://cdhsupport.blogspot.com

Great Article For Those Thinking of Starting Foundations to Help CDH Families

With so many organizations and foundations helping CDH families there are so many great resources! See our post about the members of ACDHO for a list of groups that are truly helping CDH families.

Starting a non-profit is very hard work! We've seen a lot come and go over the years and unfortunately we've seen a couple with not so great reasons for starting and they ended up hurting more people than helping them. Starting a non-profit is not a decision to take lightly - it's a great responsibility and should be embarked upon with only the purest of intentions and a lot of research.

The following article is one of the most candid, realistic and helpful articles on non-profits that I have read in my 14 yrs in this field. We are getting a lot of interest in starting new foundations and organizations for many different services (yeah!!!) and I thought I'd post this article for everyone.

Nonprofit Incorporating - The Business Plan
by Donald A Griesmann, Esq.
http://www.tess.org/misc/080123NP_Biz_Plan.pdf

From this article:

QUESTIONS TO ASK YOURSELF BEFORE INCORPORATING

Take the first question below, "What is the purpose of your nonprofit?" (It is really not
yours, you know; it belongs to the board and the community, not an individual) Your
answer may be to save whales, to overcome AIDS, to work with troubled youth or to
have a community development corporation. Go beyond those answers. Review and
work on the rest of the questions and come back to the first one and see if you have some
additional purposes or reasons for starting a nonprofit. Put your answers down on paper.

1. Are you being HONEST with YOURSELF? What do you want out of this
for yourself? What is it in your character development that makes you the
one to do this? What do you stand for ethically? Are you looking for a job
or control or an organization that will be active the day after you die? Will
you be honest with others and up front about what you are looking for? Do
you have personal knowledge and/or experience with details, budgeting,
managing people and leadership? What are your personal strengths and
personal weaknesses and will you talk about them with others to make this
organization happen? Are you an ethical person?

2. What is the purpose of your nonprofit? Why are YOU starting a
nonprofit? Why are you starting THIS nonprofit? What is your vision,
your mission? Describe the opportunities that are available.

3. Can you partner or join with another nonprofit organization performing
the same or similar mission without incorporating another group? How
will you avoid duplication of mission, services and work?

4. What are your qualifications and experience to open and operate this
nonprofit business?

5. What kinds of activities will the nonprofit involve or sponsor? Who will
be responsible for these activities? When will they be accomplished? How
will you KNOW they were successful?

6. Will you be providing a service? Will that service be limited to certain
customers/clients/others? Who? How? Why? When? By whom? What
will be the proximity of your office and service to your
customers/clients/others?

7. Will you have membership? If so, who will be eligible and what duties,
obligations, authority and dues will members have?

8. What will be the name of your organization? Have you reserved that
name with the State?

9. Where will you be opening and operating this nonprofit? Do you intend to
use property you or a family member owns?

10. Who will you have on your board of trustees? Will they and other people
provide money and assistance? Why will you have them on the board?
What part will they have in decision-making? What part will they play in
the organization? Please note that some states call the board “trustees” and
some call them “directors”. Be consistent with your state. Your state law
may also list the required officers.

11. What are the advantages and disadvantages to incorporating THIS
organization? Make two columns and list both advantages and the
opportunity and the disadvantages and risks. Talk to others who are
working with you to add to both lists. Do the advantages outweigh the
disadvantages?

12. What are your resources? What are your talents, experience or education
to operate this organization? Will the board contribute financially to the
organization annually?

13. Will you have paid staff and personnel? Will you have volunteers? What
are their responsibilities and authority? What roles will they play in the
organization? What are the responsibilities of the organization to its employees and volunteers? Who will handle those responsibilities? What
written policies, procedures and forms will be required?

14. What is your experience in managing a nonprofit organization or other
endeavor? How good are you in writing and maintaining records, policies,
procedures and forms? Do you know what reporting you will have to do,
when and with whom?

15. Will your organization or personnel require licenses, registrations,
approvals, certificates or permits? Will your staff require licensing,
professional degrees, criminal background checks, or drug testing?

16. Do you own equipment or other forms of property? Do you plan on
acquiring property and equipment? Will you purchase or lease the
equipment and property? How will you acquire these resources? How
will you pay for renovations, furniture, equipment and signs at an office?
How will you pay for the continuing maintenance and improvements?

17. How and where will you keep supplies, stock and inventory?

18. What are your financial needs? Does the organization have a bank
account? What are your financial skills? What kind of grants or funds will
you need? How much money will you need to begin to open this
organization and sustain it - for 1 to 6 to 12 months, or for three years?
Where will that money come from? How will you assure fiscal integrity?

19. What potential liability and risks does this nonprofit have? What insurance
protection will you need? How will risk management assessed and be
handled?

20. Have you received any training, education or technical assistance to
operate a nonprofit business? If you have not received any training,
education or technical assistance, will you need that kind of help? Where
will you find that help? How will you pay for it?

21. Have you developed a business plan? Do you know what a business plan
is and why you need one?

22. How will you keep financial records and other important records such as
contracts, orders, wage payments, vouchers, bills of lading, bank accounts,
tax information, personnel records, annual reports, audits and so on?

23. Are there other nonprofits or for-profit groups - competition - like yours in
the community where you will open? How and why is your nonprofit
different than they are?

24. What are the major impediments for you to start this organization? What
are the barriers? How will you overcome these impediments and barriers?

25.How will you advertise or market the nonprofit's service? How will you
get customers/clients/supporters? What will be your niche or specialty in
the community you serve, the market place?

26. Have you or other members of your family and friends operated a business
or another nonprofit? Will they help you in this enterprise? What will
that help be? Are you aware of rules on conflict of interest and
intermediate sanctions?

27. Does your group plan on dissolving after a period of time or is it a long-
range project?

28. Do you believe the organization will be involved with lobbying, advocacy
and/or political activities?
Do you have the right stuff to create, maintain and sustain this dream?


REASONS NOT TO INCORPORATE A NONPROFIT ORGANIZATION

This is the start of the questions. Jot down your answers as you read this and the next
several sections.

1. You do not have a group of people who share your mission, passion and sense of
vision who will work with you to create this nonprofit tax exempt organization.

2. You are not sure whether other people will work with you on the project.

3. You left a similar organization and you want to compete with them.

4. You really do not know how much work it will take to incorporate in the State
and file with the Internal Revenue Service.

5. You do not expect to raise money or seek grants, at least no more than two to
three thousand dollars a year.

6. You are not sure what kind of work goes into operating a nonprofit corporation
after it is incorporated and recognized by the State as a nonprofit organization and
by the IRS as a tax exempt organization.

7. You know there is a need for this service but you have not documented the need
and do not know how to go about assessing and meeting the need.

8. You believe it is easy to incorporate a nonprofit tax exempt organization.

9. You believe it is easy to operate, sustain and maintain a nonprofit organization.

10. You believe it will be easy to raise the money to accomplish your goals and
objectives.

11. You like to be independent.

12. You have a great idea, this is a great opportunity and you are concerned that other
people who become involved will change the programs and activities you want.

13. You and your family want to control the organization so that it will be run right.

14. You want to be the chief executive officer such as the executive director for a
salary and sit on the board as chairperson.

15. You are going to aggressively seek grants because it is easy.
Please rethink why you want to start a nonprofit. There are many great reasons and
motivations but those are not among them. Nonprofits as with for-profit businesses can
fail. The reasons listed above will help you along the path to failure. Nonprofits can fail
when they are not mission-driven with a business-sense but driven by some other force.

Donations In Honor / Memory of Cherubs

(From Dawn)

I just sent this out to my family and friends:

http://www.firstgiving.com/cdhresearch

I am donating in memory of Shane this Christmas and invite all of you to donate in honor or memory of someone that you love. CHERUBS receives little donations and no grants. None of our volunteers are paid. We run out of my house to save costs. Yet, we help over 2600 families in 38 countries and do research as well, not to mention having to fight this trademark for all CDH families and organizations. We do all that we do for FREE for these babies and families. We LOVE what we do and we could do so much more with just a little of help. It's tax-deductible even! So before you donate this year to the big foundations with millions of dollars or those with big grants or those who are all about raising money and making money and getting donations.... don't forget us little grassworks little guys who are working hard to make a difference and do it all freely! We could be doing so, so, so much more! http://www.cdhsupport.org

--------------------------------------

You all, it's been a hard year for everyone, I know. CHERUBS has taken a hit as well and if it wasn't for a few generous members who make sure we keep up services.... a lot of things wouldn't have happened, like our conference. Now, we're fighting this trademark issue and if we lose, we won't be able to keep our fundraising sites like cafepress up without paying someone a fee everytime we sell something - if we get to keep them at all. This will devastate us financially. Usually just 3% of members donate each year - this year it's been about 1%. That's around 26 members out of 2600. But that's ok - we're not here to make money, we're here to help you all! Our big events were great - but we broke even after costs and the conference (conferences are not cheap!) - and it was our first year for the Angel Ball and Golf Tournament so we needed more exposure and more ticket sales. Next year hopefully will be better.

We could be doing so much more - newsletters again, new member packets again - both cut because donations have dried the past 3 years due to slander that I won't get into here. But do you all know how many families that has affected? How many new and expectant families who didn't get packets of information from us? And how many off-line families who aren't getting newsletters? We need your help. I HATE asking for donations.... which is probably why we don't have grant funding but Sarah's going to help us with that next year - yeah, Sarah! Smile But for now... for our conferences, research site, this site and all of our services.... we could still be doing so much more! Those of you who have only been here less than 3 years.... if you only knew all that we used to be able to do, how much bigger we were in services - we have taken such a hit. And it breaks my heart to not be able to offer all the things we used to be able to offer.

I know a lot of you help raise funds for the Red Cross, March of Dimes, Pulmonary Hypertension Foundation and other foundations.... it's wonderful, absolutely wonderful and I am so proud of you all! But please don't forget CHERUBS.... those organizations are amazing but they all receive mega-money from grants and marathons and awareness days and we're just the little guys here but I think - and correct me if I'm wrong - CHERUBS makes the most impact helping CDH families. We're here for all of you, any time you need us. There is nothing we won't do to help CDH families and we've spent the past 15 yrs showing that. We're a charity - not a business without a heart - our focus is YOU! :)

We don't ask for donations much. We don't send out letters or e-mails asking for money. We don't charge a membership fee like most organizations our size do. And we all volunteer. The marketing company keeps pushing me to have a call center and call you all individually asking for donations - I won't do it. CHERUBS is not about money, at all. But companies charge us for this site, our po box, postage, ink, paper, event rentals, ads, hosting, etc - we have to pay that somehow. A smile and a "please don't charge our charity" doesn't work - I've tried. :)

And don't forget you can create a firstgiving page in honor or memory of your cherub too. Great way to raise money and awareness with family and friends! A couple of you raised quite a bit this way - bless you! http://www.firstgiving.com/10125

So this is *not* a plea for money..... this is a *please don't forget we're here and we need help to keep functioning too*.

A few members with Firstgiving pages helping to raise money for CHERUBS and CDH Research:

In honor of Logan Wagner - http://www.firstgiving.com/loganscdhfundraiser
In honor of Adam Hess - http://www.firstgiving.com/karahess1
In memory of Faith Grace Miles - http://www.firstgiving.com/faithgracecdh
In honor of Jayden Valasek - http://www.firstgiving.com/jaydenvalasek
Gabe's Bowl-A-Thon, in memory of Gabriel Nava - http://www.firstgiving.com/gabrielsbowlathon
In memory of Madison Brooks - http://www.firstgiving.com/christiebrooks
In memory of Emily Lepaige Spencer - http://www.firstgiving.com/bessiebatton
In memory of Asher James Switzer McCoy - http://www.firstgiving.com/babyasher
In memory of Shane Torrence - http://www.firstgiving.com/shanetorrence
CHERUBS (our first page that we haven't really used yet) - http://www.firstgiving.com/cherubs
Congenital Diaphragmatic Hernia Research - http://www.firstgiving.com/cdhresearch
Congenital Diaphragmatic Hernia Trademark Opposition Fund - http://www.firstgiving.com/cdhawarenesstrademark

Help, Sponsors and Donations Needed!

We need sponsors for our 2008 Conference, Angel Ball and Golf Tournament. You do not have to be local to help. If you can help, please drop by our site or message me! Thank you!

CHERUBS Conference - http://www.cdhupport.org/events/conference
July 25-26, 2008
Durham, NC

Angel Ball - http://www.cherubsangelball.org
July 26, 2008
Duke Gardens, Durham, NC

Golf Tournament - http://www.cherubsgolftournament.org
July 28, 2008
Brier Creek Country Club, Raleigh, NC

Donations and Sponsorship fees are tax-deductible and can be made in honor / memory of a cherub. Please forward this message to family and friends!

Thank you!
Dawn

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

CHERUBS On Justgive.org & GuideStar.org

CHERUBS On Justgive.org & GuideStar.org

You can now give to CHERUBS through JustGive.org, which is powered by GuideStar.org, a charity watch group.

http://www.guidestar.org/pqShowGsReport.do?partner=justgive&npoId=191819

You can also give directly on our web site at http://www.cdhsupport.org/donate/index.php

All donations are tax-deductible and greatly appreciated! CHERUBS receives no government funding and all of our employees are volunteers. Every penny goes to help raise awareness, give information and support to families and to encourage CDH research.