Happy Tears today following the overwhelmingly positive vote in the Senate today for 21st Century Cures! Our family has worked with hundreds of rare disease advocates all over the U.S. to create HOPE for our rare disease community. Thank you U.S. Senator Dean Heller and Senator Harry Reid for putting our Nevada rare children’s needs…
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Genetic, Rare, and Immune Disorders Symposium
We attended the Genetic, Rare, and Immune Disorders Symposium in Fairfax, Virginia, last weekend. Carrie, Hannah’s mom, was a speaker discussing the importance for families to get involved in advocacy for their rare disease communities. Robert, Hannah’s Dad, met with researchers and scientists to learn the latest advancements in rare disease treatments.
#GivingTuesday – 11/29/2016
#GivingTuesday – November 29th! Help us give the gift of *hope* for hundreds of kids diagnosed with rare, life-limiting, and complex medical conditions at https://givingtuesday.razoo.com/us/story/Little-Miss-Hannah-Foundation
#CuresNOW – United Rare Disease Day of Action
* ACTION ALERT * PICK UP THE PHONE TODAY!! Every single person reading this can help us provide HOPE for children diagnosed with life-limiting rare diseases! #CuresNOW Today, we are calling on patients across America to take action for a United Rare Disease Day of Action. Our goal is to ensure that Congress passes the…
Meet Cecily, LMHF Grant Recipient
When we first met Cecily at our 2015 Rainbows in the Wind Festival, she just captured our hearts! We were thrilled to give her family a professional grade blender earlier this year so she can have pureed real food in her g-tube, and we are excited to know that she has been gaining weight because…