Our Fight against Gaucher's Disease type 2 or 3
It has been an absolutely crazy, wonderful, inspiring, and emotional week! I won’t go into detail about what we did because my husband has been doing an awesome job blogging about it. (Definitely recommend reading these). It was my first time “lobbying” and being able to share Hannah’s story personally with Senator Dean Heller and […]
[Continue reading...]Written by Robert Ostrea This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C. This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of […]
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Marie-Luise Smith, the generous woman who donated 20 Scentsy buddies to our organization last month, is hosting a Scentsy Party for our Little Miss Hannah Foundation! She has offered to donate her entire commission to our organization for each purchase at our LMHF Party. Order here! The money raised through this fundraiser will go directly […]
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I was never a huge Disney fan growing up. Disneyland was fun every once in a while, but I never really understood the “magic” of Disney until Hannah. She seemed to embrace Mickey and Minnie when she was less than a year old and never wavered from that love of Disney magic. Today, on Valentine’s Day, […]
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For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon. Each runner pairs up with a Genzyme patient to help raise awareness for rare diseases. Hannah was matched with Mandy in 2010 and Kristin in 2011. When I got the call last week that Hannah […]
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These past few weeks have been really hard. When Addy passed away a few weeks ago, it brought back so many memories, feelings. She was one of Hannah’s two soul sisters, families I met around the same time Hannah was diagnosed, all around the same age. Olivia passed 3 months to the day after Hannah […]
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