Musings of a Marfan Mom

May 14, 2010
by marfmom
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Friday Favorites

I’ve come across SO many good blog posts this week! I hope you’ll take a minute to check them out!

First up is Marce’s piece Are Breastfeeding Dolls a Sign of the Apocalypse? from the blog Life is Good. Some of you may remember the piece I wrote a while ago on the breastfeeding doll. This is Marce’s take on it, and she’s SO much more articulate than I ever was. She makes clear arguments and cites other articles. Great stuff!

Holly, from Ready to Be a Mom, and I met through a chat for women trying to conceive, and got pregnant about the same time. Heartbreakingly, her little Sprout died a few weeks ago, 7 weeks into Holly’s pregnancy. In this post, A Bittersweet Mother’s Day, she writes about the holiday this year. Most poignant is the video that her husband made. Grab a tissue. It’s a must-see, truly beautiful.

Next, we all know about the stay-at-home-mom vs work-out of-home-mom debate. I love pretty much everything Her Bad Mother writes, and especially her article this week Are You a Stay At Home Mom? This Just In: You Suck. While I can’t say I’ve had the shared experience she writes about, I can empathize with the idea. I was pregnant as I finished my Masters (graduated at 32 weeks!) and I got some similar comments about not putting my degree to use.

Finally, totally unrelated from this pregnancy/mothering train of thought, is my brother’s pathetic poem about the Cavs losing tonight, from the post Kick a Man While He is Down. Any of you Cleveland sports fans will be able to relate to what he’s talking about. It was a long night in our household, for sure, and I want to give a shout out to Stacey for texting me updates of the game while I was out of the house. Here’s hoping that there is a “next year” for our team.

May 13, 2010
by marfmom
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SIMA International Conference on Marfan Syndrome

This post is especially for my European readers. I know it’s a little late in the game, and I apologize for that!

Tomorrow, May 14th, the Asociacion Sindrome De Marfan (SIMA) is hosting the first International Congress on Marfan Syndrome. It will be held in the COFA center in the Alicante province of Spain. My friend Badamanes filled me in on all the details.

The topic of the conference is the Losartan vs Atenolol trial. Those of you in the US will recognize Dr. Hal Dietz and Dr. Bart Loeys (Belgium) on the speaker list; Dr. Julie De Backer of Belgium, Dr. Alberto Forteza of Spain, and Dr. Artur Evangelista, also of Spain, are the other speakers.

Friday the aforementioned physicians will be speaking, then that evening there will be an awards dinner for SIMA members at Alicante Castle. It is the organization’s 10th anniversary. Saturday will have self-help groups (much like the Sunday morning workshops at the NMF Conference) and then a general assembly.

For those still interested in attending (it’s not too late!), the conference and dinner are free for SIMA members. For anyone else, the cost is 100 euros or $127 US dollars. Travel to the conference and the hotel fee are not included, although a hotel has been reserved at a reduced rate for conference participants. So far over 200 people have registered!

If, like me, you can’t make the conference, Badamanes is going to be tweeting about it! Look for the hashtag #simaconf. The conference lectures will also be video recorded and there may be English subtitles added. SIMA Magazine’s next issue will also be dedicated to the conference.

I’ll be checking up on the tweets as I have time. Hopefully Badamanes will be willing to share his thoughts and maybe some photos with us after the conference is over!

Any questions that you have can be directed to Miss Manuela Alonso, at congress@marfan.es. She speaks English.

Also, don’t forget to enter the puppet theatre giveaway!