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

298 ViewsLast 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 …

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

263 ViewsLet 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 …

What a difference a day makes…

525 ViewsLast Thursday, my family gathered in Washington DC with other families affected by our rare blindness (CRB1 degenerative retinal disease) to raise awareness for our children that are blind or visually impaired due to this rare disease, and to stand on behalf of all those affected by rare eye diseases with support from our Congressman, Representative Mike Fitzpatrick.  As I …

When my “piano man” had the rare chance to get up close to THE Piano Man…

428 ViewsYears ago, my oldest son, Michael (now 16 years old), was an athlete that also loved spending hours at the piano.  He’d come in from either baseball or football or wrestling or swim practice and head right to the piano to play a few songs that were running around in his head.  I thought it was great to have …

When The Boss kicks off a 16 year old’s birthday, like a boss…

458 ViewsThis past weekend my husband and I took our 16 year old son on what I called the #EpicBdayWeekend: three of his favorite concerts in  four days.  It may seem a bit over the top and over indulging to some, but that would likely only be the case for folks that don’t know our family and our story, or …