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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The symposium this weekend was terrific! I love any excuse to get together with my Marfamily, you all know that, but the information was also fantastic and I learned a lot of new things.

Dr. Liang, head of Stanford’s Clinic for Marfan Syndrome and Aortic Disorders, gave the first lecture. He oversees the Stanford Losartan vs. Atenolol trial site. The first major run of data has already been done and the study hasn’t been stopped, which means there isn’t a clear “winner” yet in terms of which drug slows down aortic growth the best, but there’s still quite a ways to go yet! Enrollment has been extended until January and they’re 50ish people short of the 604 participants that they need.

Next was Dr. Fishbein, a new cardiothoracic surgeon at Stanford who is working under Dr. Craig Miller. He discussed a few of the options for aortic surgery and showed pictures from all of them. Luckily, it wasn’t right after we’d all eaten! I loved seeing just how aortic valve sparing surgery is done though!

Our chapter president used to work at this AWESOME place called the Office of the Patient Advocate. Her boss came in to speak about what they do. If you live in the state of California and are curious about the quality of your insurance company, or are having problems with your insurance company, GO TO THEM‼! One of the awesome things that they do? In CA, if your insurance company won’t cover something they think you should (say, you want to go out of network to Stanford so you can get valve sparing surgery instead of a mechanical valve), you can file a complaint with the OPA. An independent panel of doctors will make the final call about coverage and the insurance company has to do what they say! How awesome is that? Not every state has one of these, CA was the first, so you may have to do some digging to see what’s available where you are.

My favorite lecture was Dr. Carroll’s, on pain management. Why isn’t he MY pain management doctor?! Uh, because it’s brilliant doctors like him that spend most of their time doing research. Anyway, he actually made his presentation available online, but I’m having trouble getting the link to work. Once I get a working link, I’ll post it here. He is also interested in doing some research on Marfan pain (and not many doctors are!), so he’s looking for local Marfs who are interested in being involved in a study.

Dr. Dwyer, from California Pacific Medical Center, spoke on pregnancy in Marfan syndrome. It was a great lecture. It covered all the different risks, but also gave the message that pregnancy is totally manageable for women with Marfan syndrome.

I was the last speaker. I gave a short talk about my journey thus far as a Marfan Mom. I’d put it up here, but it’s nothing I haven’t already said before.

We finished out the day with a presentation from ULaugh, a company that does laughter classes for companies and hospitals. It was ok. Those aren’t really my thing, but I think most people loved it.

I can’t wait for next year’s! These are NO substitution for conference, but if you have specialist sin your area, a one day meeting like this can provide a lot of good information, especially for those who can’t attend an NMF conference.

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.