3 ways I found an extra 2 hours in a Saturday afternoon…

3 ways I found 2 extra hours in a Saturday afternoon… Wikipedia defines Human Multitasking (as opposed to computers) as:  an apparent human ability to perform more than one task, or activity, over a short period of time. Warning: Multi-tasking is not a talent of mine and it is certainly not for everyone! Even Wikipedia warns of this:  “Multitasking can …

I am not about politics, I am about possibility…

I am not a feminist – actually, I am not even sure what that word means anymore.  I am a woman.  I am a Mom.  I am not about politics, I am about possibility.  I am raising two sons and a daughter.  Because my two sons are blind I have been on  a sixteen year mission to find successful blind …

Cupcakes and Lemonade: bittersweet in more ways than one…

Memorial Day weekend is the anniversary of the launch of my family’s proudest mission, the Curing Retinal Blindness Foundation. Five years ago, after finding a few families with our sons’ retinal condition, we created a little website in the hopes of raising enough funds to get research moving for gene replacement therapy.  More on that in a bit. Memorial Day weekend is …

10 Tips to extend your reach of your Rare Disease community.

Last week I had the honor of presenting at a fabulous rare disease advocacy/collaboration event:  the Rare Patient Advocacy Symposium co-hosted by PENN Medicine’s Orphan Disease Center and Global Genes.  If you are in the rare disease space, you know why I was honored to be on THAT stage.  And whether you are in the rare disease space or not, …

Blogging rocked my mission… and I never even went viral.

Let me catch you up ever so quickly on how my “I am not a blogger” self got into this platform that rocked my mission: Seventeen years ago I was a teacher. Sixteen years ago my first born son was born blind. Twelve years ago my second son was born blind. Five years ago I started a non profit with moms like me to …