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I have no doubt that this post is going to make me seem like a great queen bitch, but yesterday was Martin Luther King Jr Day, and as he so famously said, “our lives begin to be over the day the we are silent about things that matter.”
One thing that matters a lot to me is accountability.
Blogger Kelle Hampton is raising money in honour of her daughter Nella. In case you are not familiar with any of this, her daughter Nella is the small person whose birth surprise gift of an extra chromosome rocked Kelle’s world and sprung from her the famous birth story. Well, it seems that Kelle raises $100,000 for each year that Nella has been brightening the planet: when she was one year old, it was $100,000, 2 was $200,000. This year she is 3, so yeah, that means $300,000.
Every penny of the money is given to the NDSS, the National Down Syndrome Society.
This is the part where I start squinting.
You see, Kelle created a great little clip of a video. Well, to be honest, it just seems like it was great – it didn’t have captions and I couldn’t hear a lot of it because of the music. The music was fun and the rest of the video seemed really spot-on; I liked all of the people with Down syndrome speaking for themselves. I do wish I didn’t have to rely on lip reading to get what I did of what they said, but there you have it.
Anyway, the video is here, In the text after the clip, she goes on to talk about how she’s trying to “raise awareness” and “create opportunities” for people with Down syndrome with all the money that is being raised.
“Raising awareness” and “create opportunities” – two fantastic little phrases that can be so vague and yet sound so great.
Hey, let’s “raise awareness!” Let’s raise a whole bunch of money and “create opportunties”!! – only, if you follow the links to the NDSS site, there isn’t any mention at all of how the money is actually used or any type of accountability whatsoever.
It’s like this happy pit. You can throw your money in, “$5 for every time you thoughtlessly used the “r” word”, as one woman commented on instagram. You can do it to feel good, feel better about yourself, about “opportunities” for people with intellectual disabilities. Give your ten bucks, you care, you are a good person.
And NDSS is that bastion of greatness, right?
It might be so and it might be that I’m a horrible, terrible, no-good person to even be asking these questions, but I would dearly love to see a little transparency in this. I’d like the NDSS to have a spreadsheet showing how they used every dollar that was donated in the name of Nella, and prove how those dollars actually have “created opportunities” for people with Down syndrome.
Don’t get me wrong: I want those opportunities. I want that awareness. I want the happy and I want the full money pit for people with Down syndrome. Maybe that’s where these questions are coming from – I want something from the NDSS proving that they really are using it for the reason people are giving it.

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  1. I understand what you are saying! I saw so many people donate to red cross with Sandy, and then saw pictures from people in NY who were showing how crappy of a job red cross was doing….I like to see where my money goes and love to donate to good causes, but sometimes its nicer to pick smaller causes/organizations to donate to.

  2. Leigh Ann Fibbe says:

    You can usually contact a non-profit, especially a large one like NDSS, and they will provide you with financial statements. It’s required by law. I appreciate your desire to know how a non profit organization is spending their donors’ money. However, I think this can also be an easy reason for people to explain away why they don’t give to nonprofits.

  3. OMG!!! I could not open this fast enough to read. Thank you!

  4. Agreed! I wish charities were a lot more transparent, but no one really asks. Everyone does just want to feel good about donating that they are willing to not ask that question. I know our local (state) Ds organization has been publishing its costs for the last few years and I believe it was in response to people questioning where the money goes, especially from the Step Up walks, which is their biggest fundraiser. I’m not necessarily asking down to the penny, but I think it would be nice to know how much is spent on programs, training, parent workshops for our kiddos and their families and how much is spent on administration. I was a public school teacher for 10 years and a department chair for 4 of those years and I had to account for every tax dollar our department spent……….it would be nice for other places to do the same!

  5. Sharon Siqueiros says:

    Thanks for bringing this forward!! I have been wondering myself…..Don’t feel bad or think you’re a bitch,YOU, well, WE have a right to question and know where the money goes!! just sayin’…..

  6. Christine says:

    I agree! I so wish she would donate money to the Down Syndrome Research and Treatment Fund. I mentioned this on Instagram, but my comment got mysteriously deleted. Hmmmm…..
    But then again, her kid is one that really doesn’t have any cognitive delays so why would she be looking to make a difference in our kids cognitive abilities when hers doesn’t have any issues.
    Okay…rant over. Thanks for posting this.

  7. Great post, can I just say that. Really spot on and really, really needed to be said. Thank you for it.

  8. I would love to know how they spend their money….doesn’t seem applicable to my 5 year old

  9. So, if you are unsure that the NDSS is using the money properly, have you written them a letter or called them and asked?

  10. I’m with ya sister – where DOES that money go and HOW does it help create opportunities. Altho I follow the Nella story I hesitate to give because I just don’t see how that money is spent. You are NOT THE QUEEN BITCH – only speaking what so many others think. Now Carry ON and post more pics f the adorable kiddos!

  11. Hi Meriah — Why don’t you ask the NDSS for a breakdown of where the money goes? With such a high-profile fundraiser, I’m sure they’re asked all the time. Then you could post it here!

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