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This is How I Parent Hannah 5 Aug 2013 | 08:15 am
Our 2nd Annual Little Miss Hannah’s Rainbows in the Wind Event It has been a major roller coaster of a month. So many wonderful things happening yet all of it clouded by the simple fact that Hannah...
Few weeks to go 4 Jul 2013 | 12:46 pm
Happier times… There are just a few weeks left until what SHOULD have been Hannah’s 5th birthday. I’m still trying to sort out how I’m feeling about this. Obviously, that is why I continue to blog...
Little Miss Hannah’s “Rainbows in the Wind” Event – July 24th! 24 May 2013 | 07:42 am
Only two months until our big July event! Please be sure to join us at Town Square on July 24th, 2013 at 5:30 pm. Picture it…hundreds of colored feathers blowing in the wind, carrying messages of l...
The “Irrational” Stage of Grief 10 May 2013 | 09:24 am
We always hear about the 5 stages of grief. I think they need to add one more – Irrationality. Seriously. In my head, I know things are a certain way, but convincing my heart that what I’m thin...
Little Miss Hannah Continues to Impact our Rare Disease Community 12 Apr 2013 | 05:28 am
Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond (Reposted from My San Antonio media) (BPT) – Getting a diagnosis is just the first of many cha...
Little Miss Hannah Goes to Washington! 3 Mar 2013 | 12:10 am
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 rec...
Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness 25 Feb 2013 | 08:43 am
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), loca...
Scentsy Fundraiser for Little Miss Hannah Foundation 17 Feb 2013 | 07:51 am
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 ent...
I’ve Had a Magic Spell Cast Over Me 14 Feb 2013 | 10:04 pm
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 sh...
Hannah’s Third Boston Marathon! 14 Feb 2013 | 07:21 am
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. ...
