Apparently being a loud mouthed, opinionated mama bear does get you somewhere!
We have been chosen to represent our state for CF in two separate ways!
First, I received a call from our genetic counselor and were asked if we (along with a few other MN families) would share our story with the Minnesota Genetic Counselors Association’s new website.
This includes a photo shoot & the opportunity to share our story of receiving Gavin’s diagnosis via the newborn screening test and how having a child with a genetic disease affects our life.
Let’s see…spreading awareness of CF and a family photo shoot? Yes please!
Secondly, I was just called today and asked if Casey & I would become ambassadors for helping parents to see & understand the positive side(s) of clinical research. Three states were chosen by the CFF to participate in this new, and experimental program idea. Three families of young CFers and three adult CFers were chosen to represent Minnesota, and we are one of them!
It’s an extremely new concept, and we aren’t sure what/how much influence we can make…but hopefully it will be huge! And we’re going to speak (I think) at our Great Strides Walk on May 1st.
And then something I decided on my own. Many of you are aware of Conner, the 7 year old CF warrior who is a walking miracle and a true inspiration. His parents were just informed that the time has come to place him in hospice and the entire CF community has surrounded this family with love. I haven’t been able to stop thinking about them and was trying to think of a way to make a difference.
So, I decided that our team, Gavin’s Groupies, will wear red ribbons (Conner’s favorite color) and carry red balloons on our walk to honor Conner’s brave fight against CF. And then I thought…why not get everyone involved? Let’s link together all of our Great Strides walks AND support our brave man!
And so it began. Please search facebook for the event, RED FOR CONNER! (let me know if that link doesn’t work!) and join in with us! We are hoping to get walks across the entire nation to share pictures of their “splashes of red” so that we can show Conner, and his family, that his entire CF family is standing behind him. I’ve lost count of the number of walks & states already joining in…it seems like my little idea is working….