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Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

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February 27, 2013 by Carrie Ostrea

Getting Ready to “Storm the Congressional Hill”

Starting our day at the Washington Club

Starting our day at the Washington Club

This morning, we will all meet as a group at The Washington Club to be briefed on our visit to Capitol Hill and then we will head to Congress to deliver our messages.

Our Nevada delegation consists of Robert and Carrie Ostrea of the Little Miss Hannah Foundation, based in Henderson, and Hugh and Chris Hempel of the Addi & Cassi Fund, based in Reno.  Both of our families are very strong advocates in the childhood rare disease space.

We have meetings scheduled with Senator Dean Heller (R-NV) and Senator Harry Reid’s (D-NV) Senior Political Adviser, along with Rep. Heck (R-NV-3) and Rep. Amodei (R-NV-2), with the primary goal of establishing relationships with these members of Congress and encouraging them to become more involved with issues affecting the rare disease community.

I will share our experiences after our meetings today!

Filed Under: Blog, Front Tagged With: Advocacy

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