Honestly Remembering My Son - Starting a Charity the Right Way

There are lots of ways that I remember Shane and try to honor his memory:

I'll spare you from the literal 1000's of photos I'm in doing charity work.  You're welcome.  :)

But there is one thing that I'm most proud of in the way that I'm remembering my son... and that is that it's been honestly, without using or harming anyone else.    Let me be clear... the charity I run was not started in his memory.  Or even his honor (he was still alive then).   It wasn't started so I could make friends or have support.  It was started for other families coming down the same path of CDH.   It was named for babies that earned their wings.  Now, there are some great charities I work with started in memory of specific babies but their focus is helping others - not exalting their child.  It's about helping families other than their own.  That is what a charity should be all about.

If you want your own mighty oak tree... plant a seed... don't rip a branch off an existing tree and try to plant a splinter. That doesn't make you an arborist, it makes you a vandal and a thief.

A tree has roots, it's tended out of love and care by many, it provides shelter and shade. Who are you to rip branches off of what God has grown, what so many receive shelter from... just so you can scream "I have a tree too!"?

That sounds really negative, doesn't it?   Well, I need to vent a bit and clarify a few things.

Let me explain... in the 19 years I've been at the charity, we've dealt with this 7 times to include about 2 dozen people.   This is how a person starts a group / charity the wrong way, by taking advantage of another charity.   I truly believe no one starts out to do this but somewhere around Stage #3, something happens to people with weaker self-esteems / big egos / mental health issues / know-it-all mentalities or those with an inability to work with others on a team.  I'm not diagnosing anyone or labeling anyone, I'm just trying to make sense on why anyone would want to hurt a charity instead of taking a more professional, mature and positive path to start their own group / charity the right way as a grassroot effort.  By grassroots, I mean starting with a seed, a thought, a plan and working hard to start from the bottom up.  Not ripping up someone else's grass and planting it in your own yard.   

So after all these years and all these experiences, some of us agreed that it's the same routine every single time when someone goes over the edge.  The same predictable, barely varying, heart-breaking routine in stages:

1. SUPPORT - A new family joins the charity, we help them as much as we can.  Whether it's emotionally, financially or both.  We are there for births, funerals and midnight calls and texts from ultrasound rooms.  Our hearts and souls are open to help 1000%.  Here's where most families stop.  Only 1% go to Step #2 and volunteer.
2. VOLUNTEER - One of the parents volunteer.  They sign 3 contracts -- a Volunteer Contract, a Conflict of Interest Contract and a Confidentiality Contract.  All 3 are legally binding and they sign them voluntarily, agreeing to all that's in them.  Here's where all good volunteers stop.  They work hard and give immensely of their time and hearts to help other CDH families.  They are angels on earth.  If they need to step down, they do so professionally and politely and remain active members of our charity.  Only about 15 out of 200 go to Step #3.
3. POPULARITY - They make lots of friends, focusing on socializing and being popular on social media.  Start to collect friends and fans from other volunteers, pages, groups, etc. Increasingly need and want attention, recognition and praise to a much higher level than other volunteers.  The cliff phase.
4. WITHDRAWL - Do some volunteer work once in a while, spend more time on social media.   Projects sit by the wayside, families are neglected.
5. PLANNING - Accumulate charity information, data, behind-the-scenes knowledge. Hoard it, gather more.
6. EXCUSES - Stop doing any work at all for the charity while they focus on their own projects.  Stall for time to gather more info and data.  Blame others for not getting work done.
7. THE TRIGGER - Steal or do something equally bad to the charity / Whine about something they want and don't get from the charity (paycheck, free items, higher position, etc) / Throw a tantrum if we won't bend a rule for them / Focus more on promoting themselves.  Something over the top to cause a lot of drama and cut the cord to our charity.  We do not publicly comment on any of this, we continue to do our work helping CDH families.
8. DEFENSE - A leader tries to talk to them about their volunteer duties (that they freely volunteered to do), they get defensive, often attacking.  They immediately quit without discussion or they do something drastic to have to be removed.  There is no personal responsibility at all.  At this stage, very few people have any idea that any of this has taken place at all and we've sheltered other volunteers, members and the public. We do not publicly comment on any of this, we continue to do our work helping CDH families.
9. THE VICTIM -  They tell anyone and everyone how they have been "wronged" or "attacked" and need to seek validation.   Public attention is sometimes deeply sought after in this stage.  They can be loud, publicly hurt, bash the charity and people in it, leave bad recommendations, file complaints, write a blog.  Play victim and demonize the very people that helped them when they needed it most.  Re-write facts.  Rant about being unappreciated even if duties were left for months undone and families lost services.  Demand appreciation for doing 1 out of 10 duties that the charity and families counted on being fulfilled and exclaim we should be more grateful they did that 1 thing.   At this stage, anger, justification and defensiveness runs rampant.   There is never any personal responsibility, apology, sincere regret in the loss of services or thought to the families or charity or community as a whole.  Professionalism and maturity are often thrown out the window.  Declare things like "You can't stop me from raising awareness" or "You can't be the only charity" - none of which is true or has ever been said or written once by anyone at our charity.  If any family or anyone else calls them out on the drama or dishonesty, piercing private messages ensue.  Name-calling is a favorite tactic to try to personally hurt others at this stage and later stages.  Character and reputation assassination of our charity and it's leaders seem to be necessary to justify their behavior.   To do and say all this, they must break legal, binding contracts that they signed, promises they made and dismiss any integrity in upholding their word or the trust others put in them as volunteers for a children's charity - often breaking confidentiality to others to get them to bash us so their reputations stay clean publicly.  At this stage, our charity pulls back from these people and their newly formed groups of supporters to distance ourselves and CDH families from drama as any professional organization would.  By doing so, we are always accused of "excluding" or (hypocritically) "asking people to take sides" - neither of which is true.  They egg on and try to cause more drama, stalking our pages, groups, forums hoping that our charity will ban them so they can further play victim.  We do not publicly comment on any of this, we continue to do our work helping CDH families.
10. COMPETITION - Without fail, within 30 days (usually just days), they start their own group or volunteer for a group who has already done this list of bad behavior.  But they use our members, information, contacts, set up, events, fundraisers and usually our graphics too (all but logos are not trademarked and free to use - but they never give us credit for our hard work).  Their own CDH day, their own CDH color - they justify this by saying "The more CDH awareness, the better" and that plays well in the ears of new parents they rally.  How many days, colors and ribbons are there for Breast Cancer, Autism, etc?   If anyone points this out, it's met again with "You will not stop me from raising awareness!" sometimes with foot stomping and a pouting bottom lip.  They stalk our social media and copy any new ideas, events, fundraisers, etc that we create for their own group.  Lots of cryptic public posts, hoping people will put the pieces of their warped puzzle together and support them and view the charity as a big, bad bully.   Splinter the community.   We do not publicly comment on any of this, we rarely even have any communication with them at this point.  We continue to do our work helping CDH families.
11. BULLYING - The really unstable ones do truly awful things like; Trademarking things / threatening people / stalking / harassing / writing blogs against people /  being loud, obnoxious and completely untruthful on social media to try to rally others to bully and hate too / running around social media deleting anything nice they ever said to or about us to hide the fact they were ever involved with us in a positive way / creating fake children, trying to access our forums, listservs, groups, get our materials / false complaints with the IRS, state, etc to try to shut us down / fake reviews to harm our charity / contact charity workers' family, friends, employers to harm them personally / verbal attacks in public places at CDH event / crashing our charity events.  Stalking and picking apart our charity and it's leaders hoping to find or contort into something awful to make CDH families leave us in droves and run to them.  Meanwhile, often they are doing all sorts of illegal, dishonest things that no one ever calls them on that they see nothing wrong with.  They are bashing a charity and other parents who helped them and they do it publicly - bullying without naming.  While saying they are "no drama" and "want to work with everyone" and "don't want to divide the community".   Hypocrisy is very self-serving.   They refuse to return items owned by the charity.   They have all sorts of "great ideas to change the CDH community" that they didn't have as volunteers for another charity.   They tear down others to lift themselves up.   They bash our charity if we ask for items returned.  They attack us if we distance ourselves.  They attack us if we try to fill their now empty volunteer positions.   They only care about their own reputations and popularity.   They will attack any of our volunteers or all of our charity if necessary.  Any attempts we make make to protect our charity are met with attacks.  They call our members and volunteers stupid "sheep" unable to think for themselves if they want to work with our charity or follow common rules of professionalism and courtesy.  They e-mail our volunteers trying to get them to leave us and join them.   They e-mail and message and attack our volunteers and criticize our charity.   They behave like witch hunters and Pied Pipers dividing, collecting and ultimately destroying the community for their own motives.  Yes, that all has happened.  And yes, these people are now self-appointed CDH "leaders" .  Yes, they all once were very involved with, supported and volunteered at our charity and once only had glowing, wonderful things to say about our charity and leaders.  No, no one at our charity has ever, or would ever behave in such a manner so unprofessional and disrespectful to our children and the whole community.  We do not publicly comment on any of this, we never have any communication with them at this point.  We do not publicly correct the things they post.  We do not criticize them or try to redeem our own reputations.  We take the high road and ignore them and say professional.  We continue to do our work helping CDH families.
12. SAINTHOOD - To overcome all the drama they have created publicly, they now are the "victim martyr, rising from the ashes", "escaping the hands of the bully charity who will now save other CDH families from a similar fate".   Please note that all this time this drama is occurring they are in an imaginary one-sided war as we are not participating or responding at all.  We simply asked them to complete their volunteer duties and respect the rules and contracts they signed.  In most situations, we haven't spoken to them since.    They post repeatedly how they're not about drama as the public show continues. They post repeatedly they are not competing with anyone and don't want to splinter the charity yet bash our charity and start their own.  Their words and actions frequently conflict but they push positive agendas publicly.  They join with others who share these morals and have done this to our charity and promote "working together".  There are lots of disclaimers before anything they say - "this is not a competition... but support MY CHARITY!".  They promote, promote, promote themselves, their experiences, their children, their knowledge, their backgrounds and almost campaign to convince CDH families that they know more, are more, can offer more and therefore have every right and expertise and should be a leader of their own charity.  Re-write history and pretend they didn't get information, members, support from our charity and did it all on their own single-handedly.  Blast anyone who reminds them of that fact.  Threaten our charity with legal proceedings if we post any past newsletters or photos of them at our events that might prove they aren't truthful.  Smile, socialize, support as many CDH families as possible for public persona often going obsessively overboard to try to impress others with their deep compassion and commitment.  We do not publicly comment on any of this, we never have any communication with them at this point.  We continue to do our work helping CDH families.
13. ENTITLEMENT - Expect our charity to continue to include and support them or they will further bash us.  Expect our charity to not hold them accountable to the legal contracts they signed to protect our charity.  Expect our charity to treat them as equals.  Expect our charity and volunteers who know the truth to smile and be quiet and be professional.  Expect our members to rally around and us to publicly support their projects "for the sake of CDH Awareness".   Expect to be included and welcomed into our programs and events as if none of the above ever happened.  We do not publicly comment on any of this.  We continue to do our work helping CDH families.
14. RESULTS - Not more awareness or services.  Not new ground.  Not more research.  The community is fractured and opportunities to push awareness, research and support farther and faster as a whole community are lost.  The children suffer longer.

Yes, 7 times over the past 10 years.   A variation of things listed about.   It's all so predictable by now that it would be funny and a good reality TV show if it wasn't so sad and detrimental to critically ill babies and their families.   You're probably thinking "After the first time, they were stupid to be used again.  Why didn't they stop this?" and that's a good question.  One I ask myself a lot.  

The truth is, we want to believe the good in people.  And if we spoke out, that would push their bully agenda.  If we sued them, that would push their bully agenda.   And we are professional.   We're not going to subject new families to all that negativity and drama while their babies are fighting for their lives.   And they take advantage of this.  

Our charity continues to do the only thing we can do... not comment even if it means letting people believe whatever they want to believe.  Stay professional.   Not feed the drama.   Not help them splinter the community.   We take the high road and hope families see that and figure out that people who cause so much damage to a charity and other families must have something they want to gain from the destruction.  What is it?  Competition?   Donations?  Volunteers?  Support?   Asking families to take sides by attacking one party?   Our charity has no need to damage, no desire to gain anything destructively.   We have no time to compete with anyone and no need to compete with anyone.   We are here to build the community up and help these children and families.  Period.  

But do you know how hard it is for not just me, but all of our Boards and volunteers to see this happen and say nothing and be professional and protect CDH families from drama?   We have 75 to 100 people who work behind the scenes and know what's going on each time.   They have 1 person usually running their show, maybe a few more, and they post awful things on-line from snide comments and digs to full on social media wars.   I'm pretty darn proud our volunteers and leaders keep their cool under such blatant nastiness!  But it is HARD!  They insult our charity - they insult all the people who work hard here to help families.   I see the comments people make... people I consider "friends".... our volunteers see the bashing... people who have no clue what is really going on chime in and unknowingly assist in bullying others.  We all have feelings too.  We're all CDH families too.   People don't stop and think that there are other people on the other end of their comments and their words have power too.  It's very sad how so many people get wrapped up into drama, gossip, even outright lies... and attack those who helped them... just by jumping on a very negative bandwagon driven by a very careless driver.

People we trusted, cared about, supported, bought in to help all CDH families.   Ego gets the best of people sometimes.   Sometimes causes become opportunities to some.   Sometimes people can't see past their own noses.  Sometimes good deeds do go unnoticed and unappreciated and punished.  Sometimes we trust the wrong people.

(Anyone out there with bad intentions... don't get any ideas unless you want to speak to our attorney.  Enough is enough.) 

These situations are sad all around but the saddest part is that if they had taken the high road, if they had come to us honestly and sincerely wanting to start a CDH charity, we would've helped, supported and encouraged like we have done with dozens of other charities for CDH and other causes.  By trying to take a short cut and using our charity instead of doing the hard work, they have cheated the whole community and themselves and hurt a lot of people who cared about them and their children.

They each made the decisions to do the things they have done.  I'm sure many of these people will bash me more for this blog post... guilty people do tend to get defensive when the truth is spoken.  That speaks more to their character than mine.   I will not choke on the truth to protect people who behave this way towards a charity.  

I won't post about all the hurtful things done to me and my family.   Or the countless tears I've cried being hurt by all this.   But I will say that if you think bullying only occurs by mean teenagers, you are wrong.  

But at the end of the day, these are the people who get hurt the most:

 

The children

 

What I am proud of is that never once did our charity do this to anyone else.  We never used anyone as a stepping stone, never took advantage of people who helped us, never splintered anything.  We're not a splinter... we're a big, mighty oak that started with a seed and grew tall with lots of hard work, compassion and integrity.   

I never had support when Shane was a baby... there was no charity at all (why ours was started).  No one gave me a newsletter or pointed me to a parent forum.  There was no financial help to support my family.   There was no where for me to go to make friends with other CDH families.   And if there had been, I would've been so thankful and grateful that it would never occur to me to hurt the very people that helped me.   And I certainly would never have put myself or my family before all the community to want to do anything but try to rally everyone to work together.   I would never, ever bully a charity or people who helped me in my darkest hours or throw a temper tantrum if I didn't get my way and splinter up a community.   That's how I was raised, what I stand for.  And what I was raising my son to stand for too.

This is the only post you'll see by me about this issue anywhere - on my son's private blog.  You don't see any names of people or groups.  You don't see any posts at the charity at all or on social media.  You don't see any posts on my personal social media.   You don't see us trying to splinter the community or ask people to take sides.  You don't see us trying to compete with anyone.  All you see is us distancing ourselves from the drama, working hard, continuing to try to help CDH families.   Because at the end of the day, no matter what words are said or typed... actions speak louder.   

What's more important is the fact this is just about 2 dozen people with too much time on their hands and a whole lot of negative energy.   We have helped over 4700 amazing, wonderful, appreciative, honest, caring, compassionate families who see that we are a charity here to help all CDH families, not one to be used by their 1 family.   That is why we are here.   That is why we keep going.   

So why post all this?  Because the truth needs to be said.  Because myself and our charity take a lot of mud slinging so that others can step on us.   Because my son's memory and all these families in our charity deserve better.  Because CDH families deserve a united community with 1 mission and no personal agendas.  Because so many charities for so many different causes are dealing with the SAME issues and same bad egos since the arise of social media.  It's not us.  It's not our cause or community.  It's a global issue that all non-profits are facing more and more.  Because it's wrong and someone has to say so.  Because selfishness serves no one, even if intent is to "help" the means do not justify the ways.

I wish no ill will towards anyone.  I do not want "revenge", I have not filed any complaints or sued anyone (yet, don't push me).   I have not posted one name or group here.   I haven't posted the volumes of information and proof of all this negativity.   I'm not here to splinter the community, I don't want to badmouth anyone.  Our charity has helped other charities start, we work with the amazing groups in the Alliance of Congenital Diaphragmatic Hernia Organizations who planted their own seeds, our success speaks for itself.  What I do wish is for peace.  For mature, professional, honest behavior from adults I and the charity once helped and deeply cared about.  For anyone who wants to start a CDH charity to do it the right way.   For everyone to make our children proud.  Like all the charities in the Alliance of Congenital Diaphragmatic Hernia Organizations, who started their charities the right way, the honest, hard-working, plant-your-own-seed, work-towards-a-bigger-better-CDH-community way.

I am posting this myself.  Not the charity, not on behalf of anyone or representing anyone.   This is not an official post in any manner.  This is one very dedicated, very tired mom speaking up for myself, people I care about and for what's true and right.

And at the end of the day, I can sleep well knowing my son is looking down on me smiling, proud of what we made from nothing but love.   That our charity isn't about just him and it's definitely not at all about me.   It's for all CDH families.   1 pure mission.   And I'm happy that 19 years, the mission is still pure and that mighty oak is still growing tall.   

So you want to start a charity?

Me (Shane's mom, Dawn) and Rhonda and Joe - the first members of CHERUBS 19 years ago.  This photo was taken last year.   Never did we think the charity would grow so much or here we would be all these years later missing our sons together still.

Repost from Facebook.   Someday I will write that book.  In the meantime, here is some info that I wrote 2 weeks ago in response to getting a ton of recent requests to help others start charities.   Hopefully this info will help any other parents who happen to read Shane's blog and want to start a charity as well.

I get a lot of requests for help to set up charities.  A LOT of requests.  To set up CDH charities and charities for other causes.   As much as I wish I had the time to help everyone, I just don't.    So I've come up with this:

* Research first.  Is there another charity that already does what you want to do?   Volunteer there instead of doubling your efforts and you can reach twice as many people in need.

* If you can't be a successful volunteer for another charity, you should not try to run your own charity.   If you can't fulfill one duty, there's no way you can fulfill them all.   Go volunteer somewhere else at a different duty.   The objective isn't for you to have "your own charity" but to help the cause, right?

* Be original.  Offer something new.   Have a name unlike other charities for the same cause.   Have a different logo.   Have different services, sites, events, fundraisers, etc.   Bring something to the table, don't just pull up a chair and demand a piece of the pie that others are baking to serve those in need.

* What services are you providing?  How will you fund them?  Who will execute them?  How will you get it started?   If you don't have a purpose and a plan, a desire to help others isn't going to really help others.

* Respect other charities.  Do not plagiarize from other charities, build upon their hard work, imitate them, infringe upon them.  Never badmouth other charities.  Do not compete for donation dollars underhandedly.  Not only is that unprofessional but legitimate charities will distance themselves from you if your mission seems self-motivated and a detractor from the cause in any way.  Professional charities with good intentions work together, not against each other.

* Get a lawyer.   You can file your non-profit paperwork yourself but it's not wise.    It's not just 1 piece of paper to file 1 time.  It's a lot of paper work.  Every single year.   And if you become incorporated, it's even more paperwork.

* Get an accountant.   Book-keeping, 990s and all the attachments are complicated.

* Stay updated on all the non-profit laws federally and in your state.   Know them BEFORE you become a non-profit.

* Becoming a non-profit is not starting a web site or social media page. 

* Do not start a charity because you want a support group for your own needs.  Start a support group.   There's a big difference between the 2.   And be upfront that YOU need support, not that you are stable, competent and ready to offer others support.  Charity is about helping others.

* Do not collect donations if you are not registered with the IRS and your state.  It is illegal. 

* Get a legitimate Board of Directors that knows what that means and will work for the cause.   A BoD is not a group of relatives or your BFFs or even a group of patients or parents.   It's not a clique.  It's not a title, it's a job.   It's also legal and financial responsibility of the charity.

* A charity is not a dictatorship.   It's not 1 person leading.  It's not about 1 patient.   That's not a charity, that's a fan club.

* The larger the Boards, the more accountable the leaders are. 

* Get insurance.  Immediately.

* Do criminal checks on volunteers.   You can't assume everyone has good intentions in this day and age.   Make all volunteers sign contracts to protect your charity and your members from dishonesty or other issues.

* The 5 year probationary IRS period is not optional.  File a 990 every year.  The IRS doesn't care how little donations you bought in.  File a 990 every year.

* Donations do not come pouring in just because you are helping a good cause.   Fundraising is not easy.   Grants don't just land in your lap.  Marketing takes a lot of time, effort, creativity and originality not to mention a lot of blood, sweat and tears.   Charity donations are way down in this economy and even farther down for new charities.

* It's not about you, it's about the people who you are supposed to be helping.  Repeat that daily to yourself if you need to.  Because you will need to every time you run into a brick wall, deal with drama, fill out the same form 20 times, get turned down for a donation for the 1000000th time, are insulted because you couldn't do something for someone, miss a deadline, etc.   There's no room for ego in running a charity.  It's not a popularity contest.  It's not a way to make someone proud, get attention, earn respect, etc.  It's not about you, it's about the people who you are supposed to be helping.

* Carefully weigh your personal life and charity life before you start.   You will sacrifice a lot to start a charity.   Your spouse, your children, your house, any other job will suffer as you sacrifice a lot to start a charity and make it successful.   There is no 9:00 - 5:00 schedule, no days off, no clocking out and not thinking about it.   It's a 24/7 all-encompassing responsibility to take on a cause and help the people who depend on your charity.   Make the decision with everyone in your life.  

* You cannot thank your donors enough

* You cannot thank your volunteers enough

* There's no such thing as enough media coverage.  There is a such a thing as bad media coverage.

* Make your tax forms easily visible to your donors without making them ask you for them.   Be completely transparent. 

* Hire a web designer and graphic artist.   The level of professionalism you display on-line has a direct correlation in the number of donations and volunteers you will get.  

* Pay for annual independent audits.   You owe that to your donors.

* Nothing on the internet is anonymous or temporary.  Conduct yourselves accordingly. 


* If you feel the need to whine on social media or air all your problems like it's a diary... you should not put yourself in the position of running a charity.  Professionalism and maturity must overrule feelings always.  Feelings cannot run a charity and shouldn't be the catapult to start one either.  This goes for spouses, children, friends, etc too... everyone is a reflection on your charity and your work no matter who said it.

* You will have to say no to people.   At some point, probably sooner rather than later, someone will ask for your help and it will not be in your mission or your budget or legal or all the above.   You will have to say no.   There's a 50% chance they will get angry about that and attack/badmouth you.  That's ok.   You are being a responsible charity leader following the laws and doing good.   Smile, wish them well, hope they find what they want elsewhere and move on.   Never risk your charity to try to make everyone happy.  You will never make everyone happy.

* If you work with a medical cause, you may lose people.   You may get your heart broken.   You may get your heart crushed.   Over and over.   You have to be ok with that and accept that.  You have to put your personal emotions aside to help others.  You have to be strong even when it's hard.  You have to sometimes emotionally distance yourself so you don't crumble and can continue to help others.   That doesn't make you cold or uncaring, that makes you able to stick around and be there for others in the future and not be an emotional wreck all the time for your own family.   This job will make you appreciate doctors and nurses even more.

* The good days outnumber the bad.  :)

* Get a medial advisory board if your cause is medical.  Never refer one hospital or doctor.   Never, ever give out medical advice  or allow trading or giving of medicines or medical equipment or promote such illegal behavior.

* Unless you have a degree, you are not an expert.   You do not know it all.   You do not have the secrets to save others, you are not a miracle worker.   You have personal experience and a desire to help others.   Know and respect the difference and the danger in not recognizing the difference.

* Do not expect the people you are helping to donate.   Do not count on their donations or support.   They are counting on you to help them.

* Do not depend on your family and friends to help.  Especially after the first year.   You have to look outside to the public to keep moving forward.

* You will go through a lot of volunteers.   Only 10% of people who volunteer follow through.   Hold on to them.   Thank them.  Appreciate them.  Don't take the other 90% personally.

* Accept that you will live under a microscope.   Every thing you do and say will be critiqued,  How much money you make, where you live, what you drive, what you wear, how you type.   You will be a non-person.   Detractors /competitors/people you couldn't help/media/internet trolls will publicly bash you, slander you, hope you fail, write false reviews, file false claims, attack you and your family and friends personally, professionally and publicly.   They will look for any possible clue to prove that you are an evil, greedy non-profit leader profiting millions off of you cause.   If you work 40+ hours a week at the charity and make a salary - even if just minimum wage - you will be criticized and put down because you should work for free and not worry about supporting your own family.  In no other field but the non-profit sector are people beat down for being successful and working hard and earning a paycheck.   But to continue to grow as a charity at some point you will have to hire someone.  Accept this will happen and toughen up!   Because that's society now and you have to accept it and put on a very hard, tough outer shell.  This is sad, but it's now true that we live in a very derogatory culture that works very hard to kick people down, especially if they try to do good.   Good thing there are good people in good charities trying to bring some sunshine into the world!  :) 

* You better have a deep savings account, trust fund or very supportive and understanding spouse who believes in the cause too and doesn't mind you working 2 jobs (one without any pay and long hours) or is willing to bring in all the household income while you focus on making the charity successful.  Running a charity is not a side hobby, it's a full-time position with or without pay.

* Rome wasn't built in a day, neither is a charity.   It's a lot of work.  A LOT OF WORK!   To do it right, it's a full time volunteer job.   Most charities fold in the first 5 years because the founders grossly underestimated the amount of time and work that would be involved.   Look before you leap.   But know that it CAN be done!   Built upon a solid, good foundation a successful charity can help the lives of many, many people and that's the reason we are all here.  <3 p="">
And in closing on a personal... I want to add a sincere THANK YOU to my husband, Craig, and my ex-husband, Jeremy (Shane's dad) because without their support there would be no charity.   They both put up with a lot and sacrificed a lot emotionally and financially to help others and never asked for thanks or recognition or attention.  Shane was lucky to have such a great dad while he was here and such a great step-dad now that's gone and I was blessed to have 2 husbands who supported my calling selflessly.

Masquerading Angels Ball October 20, 2012 in Raleigh, NC

CHERUBS 2012 Masquerading Angels Ball

October 20, 2012

6:00 pm - Midnight

Capital City Club
Raleigh, NC

Formal Charity Masquerade Ball

Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.

Money raised from this event will go to CHERUBS to fund services to further help families of babies born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity.

Attire: Our FORMAL masquerade ball encourages men to wear tuxedos and women to wear floor-length gowns. FORMAL period costumes are welcome. Formal evening gowns are welcome. Formal masquerade masks are highly encouraged. Not acceptible; typical Halloween costumes, short dresses, street clothes and scary masks.

Age Requirement: You must be 21 years old or older to attend. CHERUBS reserves the right to refuse ticket sales when necessary.

Live music by Raleigh based band, The Stone Age Romeos!

Sponsored by:

Diamond Sponsor Halloween & More

2012 Sponsorships now available! - Sponsor or donate auction items in honor/memory of your cherub!

Our Organization:

CHERUBS is a 501(c)III organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of April 2012, we have over 4000 members in all 50 states and 54countries. Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.

www.cdhsupport.org

What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. The cause is not yet known.

Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration

Taken from CHERUBS blog:



April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!

♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in!  It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥

WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level.   CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard.  All of this was made possible because we could use this phrase freely once again.

On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

After several years of awareness being inhibited, we have a lot of catching up to do!!!!  We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia.   Join us, wherever you are, in helping the cherubs!

25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration

1. Tell someone about CDH!
2. "Attend" the CDH Awareness Daily Facebook Event Page
3. Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
4. Use any of the graphics below on your blog, site or social media and tell others what CDH is
5. Ask others to participate in the CDH Research Bill and sign the petition
6. Use the above graphics as your profile photo on sites
7. Wear a ribbon
8. Wear a CDH Awareness shirt, hat or other item
9. Make a video in honor/memory of your cherub
10. Teach your children the CDH Kid's Song
11. Add a twibbon to your Facebook or Twitter accountRelease balloons
12. Light a candle
13. Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
14. Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
15. Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
16. Take CDH Awareness ribbon cookies or cupcakes to work
17. Participate in the Save the Cherubs campaign by taking photos
18. Put a sign on your car about CDH
19. Contact your local media to share your story
20. Let your cherub or other children wear wings all day to raise awareness
21. Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
22. Create a CDH Awareness blog or site
23. Collect items for the CDH HOPE Totebag Project
24. Donate to a CDH Research facility
25. Adopt a CDH Hospital

Angel Ball, CHERUBS, Shane and Me on the news

News 14 Carolina did an interview today about our Masquerading Angels Ball! 

In Depth: Dawn Williamson, Cherubs

An event this weekend will help unmask the cause of a life-threatening condition among children that doesn't get a lot of attention. It's called congenital diaphragmatic hernia or CDH and News 14 Carolina's Tracey Early sits down with Dawn Williamson, the founder and president of the non profit group "Cherubs," to talk about this year's event.

Click here to view the full video.

Vote for CHERUBS in the APX contest and Pepsi Refresh Contest! Get a FREE t-shirt!

Please help babies like Shane born with Congenital  Diaphragmatic Hernia!   CHERUBS is in the running for $150,000 in 3 contests.  ALL money won to go to help CDH!!!!!   Every vote counts!   Please feel free to repost! CDH Contests The following are CDH related events.   Visit their websites to learn more about the events and how to participate.   APX Gives Back  - $100,000 for CDH Research & Support Facebook Contest sponsored by APX Alarms.   CHERUBS is currently battling between 1st and 2nd place in this National contest!    Money raised will be used for Congenital Diaphragmatic Hernia Research and Support services! Here is how to vote: 1. Go to http://www.facebook.com/apxalarm?v=app_121215224555298&ref=mf 2. Then click LIKE. 3. Next click the "Start nom and voting" 4. Click on the blue logo for Eastern charities 5. Scroll down (load more if necessary) and find CHERUBS and endorse us! You can vote once EVERY day! Repost in honor or in memory of your cherub! The following charities are supporting us so please let's show them our support too!!!! :) Eastern - CHERUBS of course. :) Pacific - Handprints of Hope Central - Military Moms and Wives Mountain - Now I Can Foundation Canada - Quest Theatre Society http://www.facebook.com/apxalarm?ref=mf Pepsi Refresh Contest - $25,000 for CDH Information Kits for Hospitals Having your unborn or newborn child diagnosed with a life-threatening birth defect is devastating.  It is even more traumatic when there is little information on the diagnosis.  Our mission is to provide every major hospital in the country with informative kits that will provide information and support at the time of diagnosis of Congenital Diaphragmatic Hernia (CDH). Cherubs are people who were born with Congenital Diaphragmatic Hernia, a severe and often fatal birth defect that occurs as often as Cystic Fibrosis and Spina Bifida.  Every ten minutes a baby is born with CDH - adding up to over half a million babies since 2000. Money won in this grant will be used to send kits to 100 hospitals - but we are hoping to stretch the budget and get discounts on printing to be able to send out 250 kits! FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/1da7df6c-d2c6-102d-826f-0019b9b9e205?ref=mf  Site - http://www.refresheverything.com/cdhhospitalkits  Text - 101211 to Pepsi (73774) How will the 25K be Used? $ 3,500 100 copies of "Stories of Cherubs" Vol. I $ 3,000 100 copies of "Stories of Cherubs" Vol. II $ 600 100 CDH Educational Posters $ 4,000 2000 "Parent Reference Guide" Booklets $ 2,500 3000 Informational CDH Brochures $ 2,000 4000 CDH Awareness Ribbon Pins $ 7,000 3000 CDH Newsletters $ 300 100 thick boxes to hold the kits $ 1,200 Shipping 100 kits Budget Notes: All items are designed by us to defray the cost of hiring graphic designers. You have 10 votes a day - please make sure to go visit and vote for some of the other amazing kid's charities in this contest, including: CHERUBS Project #1 CHERUBS Project #2 Erin's Dream Avery's Angels Cure JM Rett Syndrome PKU Pepsi Refresh Contest - $25,000 for Financial Support for CDH Families The CDH Family Assistance Fund helps families with the expenses incurred traveling for medical care for very high-risk pregnancies and critically ill newborns. Often families have to travel 100's of miles to hospitals that are equipped to handle babies born with Congenital Diaphragmatic Hernia (CDH) and that provide ECMO, a heart and lung bypass machine, if needed. Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive.  The cause of CDH is not known, but it is as common as Cystic Fibrosis and Spina Bifida. Every 10 minutes a baby is born with CDH - adding up to over half a million babies since 2000.   The hospital stay for a severely affected baby can be as long as 1 year. With the medical bills and emotional stress that these families go through, we want to offer a little help with making travel easier and affordable. FB Application - http://apps.facebook.com/pepsirefresh/idea/view/id/11cf40c0-d53e-102d-826f-0019b9b9e205?ref=mf  Site - http://www.refresheverything.com/cdhfamilies  Text - 101202 to Pepsi (73774) How will the 25K be Used? $ 10,000 500 $20 gas cards $ 5,000 10 $500 airline grants $ 5,000 250 $20 grocery store gift cards $ 2,500 125 $20 restaurant gift cards $ 2,500 50 $50 hotel gift cards Budget Notes:  Most pediatric hospitals are affiliated with the Ronald McDonald House, which provides lodging for many of our families. Our request for hotel gift cards are for those traveling long distances overnight to reach a hospital or those rare times when a Ronald McDonald House does not have an empty room. Help Raise Congenital Diaphragmatic Hernia Awareness and Win Prizes!!! This is a contest inside a contest! CDH Awareness Kits and T-Shirts that say "I am a CDH Hero! I helped to 1000's of babies born with Congenital Diaphragmatic Hernia by raising money for CDH Research and Support!" will be awarded to the people who (1 prize each): 1. Whoever has the most "attendees" on their Vote for CHERUBS in the APX contest FB event. 2. Whoever has the most active wall on their event by getting people to vote and then post that they voted. 3. Whoever is the most creative off of Facebook to raise votes! Handing out flyers, have a "vote in" at work or school, talk to your church, etc. (take photos!) Awards given by voting done on CHERUBS forums on August 22nd - 30th. All members can log in and vote on who should win the above 3 awards. If CHERUBS wins the $100,000 prize, all 3 winners will ALSO win (valued at over $350!); 2 tickets to the Angel Ball "Stories of Cherubs Vol. I" "Stories of Cherubs Vol. II" CDH Baby Book "Cooking with Cherubs" Vol. II 4 personalized t-shirts each with their cherub's CDH Awareness ribbons on them the above prizes of a CDH Awareness Kit and contest T-shirt! What a great and fun way to raise awareness and funds for a good cause!!!!! Get a FREE "Vote for CHERUBS" shirt!!!! Vistaprint.com is a wonderful printing web site that often gives away free items!  You just upload photos and add text to shirts, signs, cards and more!   Upload your own cherub's photo and add the words "Vote for CHERUBS" or "Vote for CDH"!  It's very, very easy!   Make sure to send us photos of you in your shirt!  :) You can download free graphics below by clicking on them.   You can also download all the kids graphics to the right. Congenital Diaphragmatic Hernia Contests Promote Your Page Too