Musings of a Marfan Mom

September 7, 2010
by marfmom
7 Comments

Labor Day

I began to panic late Sunday night. Labor Day would be Mark’s only weekday off till Thanksgiving, by which time Smudge might be here. Time is running out for our family of 3 to spend time together as a family of 3! At about, oh, 2:00 in the morning I insisted to Mark that we do something fantastic to celebrate the holiday. Good man that he is, he acknowledged he didn’t understand my concern but that we’d do whatever I wanted.

I forgot that our greater metropolitan area does NOT know how to do holidays. When I checked yesterday morning, I learned all events were done on Saturday or Sunday; nothing special to go to on Labor Day itself. I should have remembered from the 4th of July…no matter what day the 4th is, activities are always done on the Sunday closest to the holiday. Dumb.

Mark suggested that we go downtown to the fountain plaza, let the Menininho run around and get wet, then walk through the plaza together and grab some dinner. It wasn’t the grand day out I’d envisioned, but it was a blast!

M. was not shy about running into the fountains at ALL. I loved watching him laugh as the water shot higher and higher. When we first arrived, there were a handful of other small kids around, each manning their own water spout. After a while though, a bunch of older kids came by. One, who looked to be about 8, came and sat on the spout the Menininho was playing in so that he could not play anymore. When M. tried to share another boy’s spout, that kid hit him in the stomach. Yes, I told that kid off. Seriously! Where are these kids’ parents? Yes, kids will be kids, but it’s a parent’s job to teach their children to be mindful of others, especially babies.



Anyway, we left soon after that because I was afraid M. would get hurt more. We had a great walk through all the little shops and restaurants of the city. Basically every place was closed for the holiday, so Mark had to do some research to find a restaurant for dinner. He was actually able to find a Mexican restaurant that did gluten-free. The food was really pretty good so I’m sure we’ll be heading back there again!

We finished up the evening chasing the Menininho around the living room and trying to narrow down nursery themes.

What did you do for labor day? Those of you with more than one child, did you freak out about spending more family time together before the 2nd child was born?

September 6, 2010
by marfmom
2 Comments

Banding Together

Since I was a teenager, I’ve devoted a large part of my life to raising awareness of Marfan syndrome and related disorders, to encouraging patient advocacy. When I find opportunities to do either of these things, I jump on it. The world isn’t always an easy place to navigate for those of us with a rare illness. There are the ignorant comments from strangers, schools that don’t want to provide services, and insurance companies who don’t understand what medications or therapies we need. Research funds can be difficult to come by.

Who is going to change this if not us? Who cares as much as those of us living with a rare illness, or those of you who are parents to a child with one? When we work together, amazing things can happen. I’ve seen it.

I’ve recently come across an initiative that is doing just that: bringing all of us together. The Global Genes Project (GGP) was formed by a group of individual agencies for various rare diseases. It’s not a non-profit organization, but an education and awareness campaign (though it is headed by a 501c3 organization, the Children’s Rare Disease Network). While as a particular illness our numbers are small, together we are a powerful group of 30 million people. GGP recognizes this and has 4 goals:

– Increase greater public awareness about the prevalence of rare disease.
– Educate the community and general public about genes and the impact genes play in rare disease.
– Build a unified support initiative that benefits the rare disease community as a whole.
– Create a creative platform that becomes a catalyst for individual rare disease foundation fundraising efforts.

The interesting thing about GGP is that it does not keep any of the money raised through its initiative. Any money a person raises goes to the 501c3 rare disease organization of their choice. This means that by working with GGP, you can still be financially benefiting your particular illness, say the National Marfan Foundation, Loeys-Dietz Foundation, or Ehlers-Danlos National Foundation. It’s a win-win situation!

So why am I telling you about GGP now? Pepsi is again hosting their Pepsi Refresh Project. During the month of September, you can vote 3 different ways, each day, for the GGP. Pepsi will fund a winning idea; we’re asking them to fund the GGP initiative. Grants range from $5,000 to $250,000. The grant money will go to supporting the GGP’s projects and overall campaign.

Slowly, together, we’ll create the change that we want to see in the area of rare disease. The Global Genes Project is one way to move things along. Please join me in supporting them by voting daily and spreading the word.

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