It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Jeff Wuchich Parent Advocate | Alternating Hemiplegia of Childhood About … [Read more...] about Spotlight – Jeff Wuchich
Spotlight – Madi Vanstone
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Madi Vanstone Patient Advocate | Cystic Fibrosis About Michael: … [Read more...] about Spotlight – Madi Vanstone
Hope, Loss, and Survival
Our Little Miss Hannah Foundation hosted our first annual Vegas Cares About Rare Kids 5K on February 25, 2017. It was an amazing success not only by the turnout of over 500 people in attendance, but by the opportunity to introduce our community to 21 rare kids in our area. Our Little Miss Hannah … [Read more...] about Hope, Loss, and Survival
Spotlight – Michael H
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Michael H. Patient Advocate | Mollaret's Meningitis About Michael: … [Read more...] about Spotlight – Michael H
Spotlight – Sandra Sermone
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Sandra Sermone Parent Advocate | ADNP Syndrome About Sandra: … [Read more...] about Spotlight – Sandra Sermone
Sisterhood of the Traveling Advocates
Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates
