April 13, 2010
by marfmom
12 Comments

Dear Toy Manufacturers

Dear Toy Manufacturers:

I understand you want your toys to look their best. All the parts need to be positioned correctly, you don’t want pieces sliding around during shipment, yada yada yada.

But REALLY: What is up with the kajillion twisty ties?! Especially after you’ve wrapped each individual piece in heavy duty plastic?!?!

I suppose I could complain about how the twisty ties pose choking hazards to my toddler and cat. Or, I could complain about the environmental impact that all that plastic will make in the landfills. But instead, I’m going to complain about the impact on my poor fingers.

Have you ever had an over-eager, whiney toddler grabbing at an exciting new toy while you try to undo 10,000 twisty ties? No? I can tell, because you FRENCH BRAID them together. Is that truly necessary? And, uh, the wheels on that school bus aren’t going anywhere, so they don’t need to be wrapped in ties. Having Marfan does give me the advantageous of having flexible fingers, but I feel for those stubby-fingered citizens of the world, like my dear husband (we affectionately say he has Hobbit Hands).

All of our lives would be easier if you just used one twisty tie per item. Each piece to the toy would stay in place during shipping and my fingers would be much happier. Thank you for your consideration,

Much love,
MarfMom

April 12, 2010
by marfmom
0 comments

Research Opportunity

I’ve got some exciting news this Marfan Monday!!!

First of all, THIS WEDNESDAY you should tune in to The Doctors! Amy Yasbeck and Dr. Dianna Milewicz (the head of the National Marfan Foundation’s Professional Advisory Board) will be on the show to talk about aortic dissection and the new Ritter Rules of Aortic Health. Check your local listings to find when the show airs.

Second, I want to make sure you all know about the Boston University research study studying the impact of healthcare costs on people with Marfan syndrome. This study runs until May 1st, 2010. According to the NMF, “the study entails filling out a 25 minute anonymous survey regarding your own experiences with health care costs. You must be 18 years or older and diagnosed with Marfan syndrome or have a child diagnosed with Marfan syndrome to participate in this free survey.”

I don’t have any stake in the study, other than that I’m a person with Marfan and I hope the results of the study with positively affect healthcare policy. The more people who fill it out, the more accurate look researchers will be able to get.

Here is the invitation to participate, the letter to participants, and the survey itself.

Again, you or your child must have a diagnosis of MARFAN, not a related disorder. Participants from outside the United States are welcome.

April 9, 2010
by marfmom
10 Comments

The Breastfeeding Post That Broke the Internet

Today, I’m just featuring one blogger: Gina, AKA The Feminist Breeder. Yes, I’ve featured one of her posts before, but man, this one was EXCELLENT.

See, this week a huge study came out about the benefits of breastfeeding. The researchers found that the lives of over 900 babies a year (just in America!) could be saved by breastfeeding and that if 90% of women breastfed exclusively (that means no formula, rice cereal, solids) for 6 months, the US could save $13 BILLION dollars.

Pretty amazing, huh?

Well, it didn’t take long before a lot of women got upset about being “guilted” over formula feeding. I was shocked by that. This paper isn’t about guilt at all! It’s about realizing that the messages we women are receiving about our bodies and what they’re capable of, especially our breasts, are WRONG.

Women are amazing and we’re capable of so much more than society would lead us to believe!

If, after being totally informed, women choose to use formula, cool, that’s your choice. Or maybe you’re like me and you had to use formula for other reasons. Cool. (Well, not cool, but you know what I mean!)

Gina’s article When It Comes to Breastfeeding, We Can’t Handle the Truth, talks about all of this in such a straightforward way. She also uses data and cites her sources, which I think is really important. Gina is a blogger who clearly puts a lot of effort into her posts and her passion for the subject shines through. I mean, just read this snippet:

Get mad that we have no paid leave to help support the breastfeeding relationship. Get mad that moms aren’t being given free breastpumps, lactation consultants, and healthier food. Get mad at a system that puts Girls Gone Wild tits on the cover of every magazine, but bans breastfeeding pictures on Facebook. These are the issues that need our attention as mothers, or as feminists, or simply as women with brains…Women are creators and sustainers of LIFE, and there is absolutely no reason to feel guilty about saying so. (Emphasis mine)

Well, a lot of people agreed with me that Gina’s post was phenomenal, and she got 10,000 hits on her site in 8 hours. JustHost, who hosts her website, decided to hold her website hostage for $150. It’s a long story and she details it here, but it ends with Twitter being a family yet again, and her followers raising the cash in just 18 minutes. (She’s now hosted elsewhere.) So, when you have a moment, head on over and check out that post too, because she lists all the wonderful “tweeps” who helped her out.

Nobody can convince me that Twitter friends can’t be just as cool as friends in Real Life.