Representing IH, Learning from Mentors, and Networking with Other Rare Advocates

In exactly one month, Kathi and I will be attending the Global Genes Project's 2013 "Tribute to Champions of Hope" Gala.  It's the day after the 2013 Rare Patient Advocacy Summit, also hosted by the awesome people of Global Genes.  Last year, Kathi and I attended just the summit and it was fantastic -- so eye-opening and inspiring that Kathi decided that she wanted to do what all these wonderful advocates were doing: raise awareness for the rare diseases that affect their lives.  We talked and we talked to other people, to mentors, to each other; and that very day her foundation was born.  We've come a long way in a year.  Still a long way to go, but we're working hard and are excited about the direction this foundation is taking.

This year, we're attending the Summit with two of our friends (Kendall and her mom, Karen) who are active in the work of The IHope Foundation.  We have never actually met them in person, but we feel like we've known them forever!  We're looking forward to seeing them and talking with them, and learning more with them about how best to advocate for IH'ers and raise more awareness of IH across the globe.  

And about the gala..... Kathi and I have never been to a fancy event before.  We're excited and a little nervous!  We're so blessed to have the opportunity to attend and to represent IH.  We're very grateful to Carrie and the Global Genes team for welcoming us with open arms.  We're determined to find just the right dresses to wear so we don't stick out like sore thumbs!  :)

~ Pia