09 November 2009

We Can Make a Difference! Let's Help CDC!

I have (what I believe is) an amazing opportunity for families who have a child with Down syndrome. The Centers for Disease Control and Prevention (CDC) has agreed to let me compile detailed feedback on their Ds Website from parents, and they will use that feedback as they work to re-create the Website!

I would LOVE if you would consider giving me detailed feedback so that you can contribute to the new Website. And feel free to share this with any family (blogging and non-blogging alike). The only thing is that I need your feedback no later than Wednesday, November 25th.

So, for the details...


When Sheridan was born in August 2008 I went to CDC's website (they have a center called the National Center on Birth Defects and Developmental Disabilities so I thought CDC would have good information for us).

Unfortunately, at that time, CDC did not have a page devoted to Ds. So I called them and told them how disappointed I was that CDC's Center on developmental disabilities didn't have any useful information for new parents with a child diagnosed with Ds.

A few months later they put up page, but it was not clear if they had talked to parents about the content. Since then, I contacted CDC and have been working with them to do the following:

1. CDC agreed for me to lead an effort to get feedback from parents who have a child with Ds

2. CDC promised me that they will actually use the feedback that I compile from parents - because quite frankly I don't want to waste anybody's time.

3. I had to convince them that I wasn't going to send them a bill at the end of this process. I am completely volunteering to do this. I wont receive a dime (or even a piece of candy) for doing this. So rest assured I'm not doing this for the (lack of) money.


Simply read the Website and provide the feedback I request below. Before we get to the specific feedback I'd like from each of you, let's go over...


1. Always keep in mind that CDC is NOT an advocacy organization. They are a public health institution and their mission and vision can be found here if you want to check it out.

2. Provide feedback that is as specific and detailed as you feel comfortable. The more detailed, the better I can give them guidance from parents' perspectives.

3. If you believe a claim is inaccurate, or you think a new/different claim/information should be added, be specific as to why (and if possible, provide a citation - like a reference to a published research article - so you can show CDC evidence and be more likely to get the change) - but not all changes will need research to back it up. So just do your best.

4. BE HONEST. If something is helpful, or if something is really offensive. Say so. And say why.

5. Think about the usefulness of this site for you now, for those in your family/community you want to educate.

6. Think about this Website from the perspective of it's two most likely users: health care providers & parents with a new diagnosis

7. If you are so inclined, feel free to copy and paste the text of the Website into a document/email and give point-by-point feedback. I'm happy to work with such detail, so don't feel like it's too much. On the other hand, this level of detail is not required, so don't feel bad about sending my some basic feedback.

8. I'm being redundant, but just to make sure I'm clear:

a. there is no right or wrong answer here - everything you have to say is valuable!

b. CDC is not an advocacy organization, so just be prepared in the event they don't take all of our suggestions.

9. CDC does not have a lot of time to revamp the Ds Website; therefore, I need your feedback no later than Wednesday, November 25th. Sorry... I don't have much wiggle room :(

10. Your feedback - any and ALL comments you share with me - will be completely anonymous. Your feedback will be in NO WAY connected to your name, blog, child, etc. Ever. I am compiling all comments/feedback into a report that will not contain any identifying information (please note in the instructions below that I do request some basic demographic data so I can tell CDC some basic things about the group of people who gave feedback - see below for more details on this).

11. Please send your feedback in one of two ways:

a. if you'd like to send really detailed feedback, or if you'd like your feedback to be private, please send it to me via email:

geneticallyenhanced [at] comcast [dot] net

b. or you can simply post your feedback as a comment to this post.


Currently, CDC has only one page devoted to Ds. Click here to access it.

1. Please read through the information on the website and provide feedback on the content.

How did it make you feel and why?
What did you like about the Website?
What should be changed and why?
What should be deleted and why?
What should be added and why?

Just give me as much detailed feedback (both positive and negative) as you can about the Website.

2. CDC agrees that they not only need to have a main page like the one they have, but they also need to provide links to a separate page for parents (likely NEW parents) and health care providers. Sooooo, that being said:

a. What kind of information would you recommend CDC put on the parent page?

b. What should they put on the health care provider page?

3. When you send your feedback to me, please also include the following information:

a. your age
b. your sex (male or female)
c. the age of your child with Ds
d. what state you live in
e. your race/ethnicity

I'm collecting this information strictly to be able to describe the ENTIRE GROUP that sends feedback (as a hypothetical example, I would be able to tell CDC that 65% of the people who provided feedback were women, and I'd be able to tell them that people from 20 different states gave feedback, etc.).

4. CDC has agreed to add pictures of people with Ds, and asked me to create a small library of images that they can use. If you are interested in having your child's picture on CDC's website, I will need a high-resolution image (or 2 or 3, however many you are willing to share - and siblings can be in some if you wish) and a completed photo release form. Click here for the form.

You should send the images and the completed, signed form (scanning it is just fine) to me via email:

geneticallyenhanced [at] comcast [dot] net

If you are not able to scan the form, you can send it to me separately by mail, just ask for my address. DO NOT send it to the address on the form because it will NEVER get to the right people!


Please note that you should feel free to give feedback on everything, just one sentence, whatever you are most comfortable with. And keep in mind that once you start, you are not obligated in any way to continue. Just do what you can and what you feel most comfortable with.

Remember, feel free to share this with non-blogging families in your area. I'm happy to get feedback from as many people as possible!

I will share the results of the feedback on my blog when I send it to CDC. So, you'll get to see what I send to CDC!

Thanks for considering my request... I really think we can make a big difference here!


  1. How did it make you feel and why?-I thought it was pretty informative but pretty basic.
    What did you like about the Website?-pretty good info.
    What should be changed and why?-don't like the the wording of big tongue as I think this may be incorrect-I know I'm being picky here but isn't their mouth smaller rather than having a larger tongue. Also where it says some common phy. features include- I think it should say MAY include. And low muscle tone not poor muscle tone. Again, being picky.
    What should be deleted and why?-nothing
    What should be added and why?maybe some added sites to direct to the differnt types of heart defects and early intervention for children and what it can include and how it can help.

    Definitely needs more pics of babies, children and adults with DS on it. I don't think there is anything wrong with showing a postive side of DS through pictures while still stating the fact about the medical issues that can happen to some.

    a. What kind of information would you recommend CDC put on the parent page?-information about how it can happen to really anyone, that the parent did not cause their baby to have DS, parent resourse like websites to different support groups online like Baby center DS group or Downsyn.com

    b. What should they put on the health care provider page?-there has got to be more positive stuff without pushing an agenda here because most docs are so negative and we all know termination is high and I think it's because docs don't give any hope to parents. Something about how early intervention helps, resources for docs to give to parents like other websites, basic info. on DS because a lot of docs don't see it every day and really don't know much themselves

    a. 31
    b. female
    c. 5 month old with DS
    d. live in PA
    e. white

    Hope this has helped some!

    So neat that you are able to help with this!!

  2. This is great that you are willing to assist the CDC in the materials that they circulate to new parents or those looking for information. I will email you my comments, but the "problems", "common physical features", "physical problems" were little to "1950s textbook", especially the "dementia". I will have much to write. Also, I do not blog... but read blogs always for information. Perhaps there can be one site that a person can go to that has links to parents blogs, because they are very meaningful sources of information. Thank you for taking up the task.

  3. I have lots to add as well Lisa. I will take some time and email you separately. Thank you for taking this on with your incredibly busy schedule.

  4. I agree with Adrienne's points, they seem small but they are more accurate. Overall, felt professional and clear.It is hard to see that they are so neutral and dry, a bit of positive would be nice. Parent page should be full of links, including blogs. Health care providers should also have links to medical experts, Len Leshins site for example,www.ds-health.com. Perhaps more cross links to other sections of their site that might apply to people with DS, ex. genetics, heart issues etc.
    I am 53yo,female, have a 10 year old, Vermont, caucasian.
    Great job- I'll give it some more thought!

  5. PS- It should be under Genetics or developmental issues NOT birth defects. I had trouble finding it.

  6. I'll be emailing you when I have some time to sit down and read it all. Thats a great thing your doing. I definitely think peoples websites should be added. There's nothing better for a new DS mom than reading other families stories. And usually if you go to one blog, there are hundreds more links. You get the whole community.

  7. This is such a wonderful opportunity! Thank you for taking on this task. My first impression was that although it was informative, it left me feeling bleak and hopeless. Like the life of my child was not going to be much more than health "problems". My little girl is a year old and she is a perfectly healthy and happy baby. I think the web page could really use some more positive language. I think there should be a way to be informative and positive at the same time. New parents need to be able to find hope in the words as well as information. I will send you an email with more specific detail.

  8. what a wonderful thing you are doing!! I'm trying to find the time to go look at the site and answer all your questions about it, and not do it half-heartedly. Hoping to get to it next week!