Musings of a Marfan Mom

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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  1. Sounds like a great organization. I’ve always been into Breast Cancer Awareness since my moms mother died of it, but now Ovarian Cancer is my cause because of the silence of it and I can only hope it will become as well publicized as breast cancer.

    I think it is AMAZING that you are so committed to Marfan and devote a lot of your time and energy to the cause. You’re an inspiration!


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