Apr 13, 2021 | Uncategorized
The Oddity of Odds in a Year that Bent Us The Oddity of Oddsin a Year that Bent Us(August 2020) It’s a rainy Monday, the eve of the start of an important month and I find myself simultaneously at a loss of words while so many are swirling through my head. September is...
Apr 12, 2021 | Uncategorized
(Eila during our Parking Lot Picnic today!) If I’m Honest I’ve always said if I had the time and temerity to write a blog it would be called “If I’m Honest.” Tonight, in the borrowed hours of Rare Disease Day 2021, that title seems like the perfect marriage...
Oct 30, 2018 | Uncategorized
Dr. Kishnani & Gabriel Meet! From the moment I began to understand what Pompe Disease is and what form of it my son has, I’ve protested the term “Late Onset Pompe Disease.” While I’m no doctor, I know the effect words...
Sep 2, 2018 | Uncategorized
This summer, Gabriel turned two years old! I’m certain he was somehow clued into the guidelines and expectations of what comes with that number as he almost immediately began saying “No!” and “Miey!” (mine) with the gusto, ownership and dedication of a Vaudevillian....
Jun 10, 2018 | Uncategorized
KMBC-TV’S Pompe Story: Both Sides Now I try not to take it for granted that, as journalists, people put their most precious stories into our hands in the most vulnerable moments with trust that when our fingers part those stories will be told in the way they...
May 23, 2018 | Uncategorized
I spy, with my little blue eyes… an amazing community full of love, hope, concern and cheers. Because of you – whether it was kind words, prayers, donations of time or money – we are able to send this check from Gabriel’s Gale to Duke...
