Little Miss Hannah Goes to Washington!

Hannah's 1st visit to the NIH in July 2009 (her second one was March 2010)

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 […]

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Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness

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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Scentsy Fundraiser for Little Miss Hannah Foundation

Scentsy Fundraiser for Little Miss Hannah Foundation

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’ve Had a Magic Spell Cast Over Me

My Valentine's gift from my hubby

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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Hannah’s Third Boston Marathon!

Genzyme's Boston Marathon Team

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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The Nightmares Return

20 months old - April 2010

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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