LEAP Sessions!

Come out and join us for a benefit concert in Washington, DC on February 29, 2012 to benefit the work of MarbleRoad , a 501c3 non-profit: connecting people who have complex illnesses with the resources they need to help them improve their lives.

***Tickets and information available at EventBrite

-$15 in advance

-$20 at the door

-$35 for extra-generous patrons

***Facebook Event Page

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Help us Raise $25,000!

IndieGoGo is an easy online platform for MarbleRoad to raise money and offer PRIZES! Please visit our page now and pledge any amount from $5 to $1,000 to help us reach our goal by Rare Disease Day — and you can pick up some great perks along the way, such as t-shirts, FAME on our website, and artwork from some amazing artists!

Please also share the link on Facebook, and post the following on Twitter:

Help make it happen for The MarbleRoad Ripple Effect on #indiegogo http://bit.ly/IndieGoGoMR #RareDisease #FQHC #Charity #DT @MarbleRoad

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Rare Children’s Storybook Project Update!

The Rare Children’s Storybook Project , funded by a generous grant from Genzyme, a Sanofi company, received twelve storybooks from families affected by rare disease. Storybooks came in from twelve States across the country, and were inspired by such illnesses as Pompe disease, Histiocytosis, Tay-Sachs, Leber’s Congenital Amaurosis, and a number of others. Read them now in the Storybook Gallery by visiting

All families who submitted a storybook have been sent a Sony Bloggie camera to create a YouTube video between now and Rare Disease Day 2012. Their videos will allow them to further share their experiences with illness and help bring awareness to the more than 22.5 million children across the country with rare diseases.

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Donate a Tweet to MarbleRoad!

We would like for you to donate a Tweet a day to our account @MarbleRoad. It’s a FREE, IMPORTANT, and EFFECTIVE way for you to show your support for MarbleRoad in the new year! We are hoping to have 300 people signed up, which could have a potential reach upwards of 300,000 Twitter followers – to tweet on behalf of 30 million Americans with rare diseases. So far 32 people have donated a Tweet, giving us a total reach of nearly 20,000 people!

Why it’s important:

Once a day (usually less) when we right a compelling tweet about our featured cause, it will tweet out from all of our accounts at once and reach our entire base.

This multiplying effect doesn’t happen any other way because all of us are never online and tweeting at the same time. This makes it automatic.

We each have a very different set of friends and family on Twitter and this casts a wide net. Some rules: We never have access to your password or private information.

We will only write one professional tweet per day (or less).

We will never write anything religious, political, or controversial from our @MarbleRoad account. Let’s do this! Click http://justcoz.org/marbleroad to donate aTweet per day to feature a great cause that we will be helping together! _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

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Tags: #1mil4rare, cancer, children's rare disease network, genetic, health, healthcare, howard liebers, marbleroad, rare, rare disease, rare disease day, rare diseases, rare disorder, syndrome, undiagnosed