As some of you know, one of my daughters' has a Congenital Heart Defect (CHD)
We are trying to reach (& surpass) 50,000 Signatures for CHD Awareness in the Media.
Please help us do so.

Here's the website:
http://www.gopetition.com/petitions/media-awareness-for-chd.html

Thanks
Chrystie

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Chrystie ~ I lived through childhood cancer, leukemia (ALL) with my goddaughter 7 years ago. I know that ALL is the most common form of childhood cancers; I had no idea that CHD was so common. That goes to show how poor the awareness factor is, especially from someone who's had a potentially terminally ill child, whom, thank God and doctos and research, recovered completely. My personal goal would be for the awareness level to be raised in general for things like this, BEFORE it touches someone you know personally, which is how most of us learn.

I have signed your petition, and my best wishes for its success, and for the health of your daughter. And your other daughter.

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Thank you so very much! Every signature counts

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I signed too. Good luck Chrystie.

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And Chrystie, I'll be interested in the progress on this matter, if you want to make periodic updates, or even if only to me personally.

And I think it's time for me to make another donation to the March of Dimes in memory of our little SuperSam. I don't have much cash now, but they will literally take $1 from what I remember.

It's frightening how the awareness levels are so low on childhood diseases, disabilities, and defects. I'll bet more people could name that immunization for cervical cancer they've been pushing for the past 6 months in a split second, or five different medications that are on tv, before they could name off a few major couple childhood diseases. Frightening.

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Yeah..I know. I'm want to start raising money for CHD Awareness, but I'm not sure how yet.

Any ideas?

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I was actually going to start a non-profit organization years ago, with the kids as the board of directors (all under the age of 9) and me as the Founder and Director, and then the parents of my friends' kids as a Board of Directors Advisory board. I had a whole business plan worked out, someone volunteered to do the website, an attorney, fundraisers planned, contacts made with radio stations, donation goals -- we were going to sponsor 10 people per year to be registered with the National Marrow Donor Registry; it costs like $75 to register as a DONOR, and we were going to have a program called Back-to-School-Wigs or something like that, because wigs are expensive -- I paid $150 for one for a shoulder-length one for a 7 year old. I wanted to drive it all the way up to scholarships for childhood cancer survivors. It had a name and a logo designed. "Shyann Childhood Cancer Foundation" (SCCF), with "Shyann" in rainbow crayon letter font as the major part in an arch block letters, with the rest in tiny black letters underneath. Cute eh? Someone to donate business cards and stationary.

Just sit down and start to decide what your goals are. Brainstorm. Start making lists of things you'd need. Get ideas from parent support websites...where are the holes in the care or what's needed? What do people complain about? What activities your kids or your friends kids are in. What major companies do you have ties to (fundraising opportunities). Basically, what do you want to do, and what tools do you need to do it. It's like thinking of starting a little business. You'd want to get info about filing for 5013c (I think that's what it's called) non profit status. All in all, it only took me a few months at most to have my ducks in a row on paper. But alas, I lost my "poster child", CEO, and soulmate in a cruel twist of fate that had nothing to do with her illness -- she was well by then, so without her, the organization could never have taken off.

Good luck, and I'll help with any ideas if you really decide to jump in.

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Well all I have come up with so far is where I want the money to go....That is Children's Healthcare of Atlanta, Sibley Heart Center, and The Ronald McDonald House Foundation.

I just know that when you or you child have any type of medical condition, expenses pile up (whether you have insurance or not).
When you have a child in the ICU , you can't sleep in there with them of coarse, so that's where the Ronald McDonald House comes in.
They are non-profit and are absolutely WONDERFUL!! (We have stayed there many times).
I already save can tabs for them...so I thought of maybe getting people to help me save them.
Also, the last time my Graci was in the hospital we got a bag from the "Baby Heart Benefit"...it have a disposable camera, toothbrushes, toothpaste, a teddy bear, a pocket calender, and some snacks among other things...so I had thought about trying to get donations to do something like that.
But, as far as that goes I wouldn't even know where to start.


What do you think about all of this?

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I've never stayed at the RMcD, but I've gone (and taken Shyann) to counceling there. They are great.

Start writing! Get a notebook, and start writing things you've seen before, things you've wished for before, things other parents or the kids have asked for. You're basically trying to start a business. Make a list of everything you'd need to start a business. Cards, stationary, website, business plan, attorney, goals, facts from medical organizations. Start talking to your friends and networking; you'll be amazed at how likely it is for so-and-so to pop up with 'oh, I have a friend who does web design' and it just goes from there. Once you have your 'status' and pitch prepared -- you can go to major business chains -- like you might have a grocery chain that would donate so many hundreds of dollars worth of $25 gift cards, or Walmart. Find other parents of other kids (I'm sure you belong to websites).

Just start brainstorming. Ask your doctors and nurses. Find out about safety precautions. See if there is a "ribbon" pin already established (childhood cancer awareness is a gold one). Write down everything you can think of over the course of weeks, fromthe simple (asking for donations) to the BIG SCALE (hosting a carnival event, raffle, or silent auction). Getting radio time. Find out if there is a Make-A-Wish drive annually in your area, see if you can get contacts through people around there. Check out other websites for other major childhood diseases...wander through the american cancer society page, the Leukemia and lymphoma society page; Candlelighters...ask Karen about her medical experiences lately and anything she's heard or seen...ANYTHING...you'll be amazed at where ideas will come from.

A fundraising idea from my day for instance: Shyann was a gymnast, and we thought of having a 'Round-off-a-thon", and having a group of her friends get little pages and having people sponsor them -- like 'I pledge $.50 for each round-off you do', and have a little event. People WANT to help, they just don't know HOW. Start writing...

I gotta run for tonight, but just start writing. Once the ideas start to flow, you won't be able to stop them. I gave away all my notes to a girl who was starting a non-profit around that time; I wanted them to go to a good cause; otherwise, I'd be digging for them tonight for you.

Just start writing...

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