have NOT been the only things in my life lately!
(Can I get a woohoo?)
We’re moving in just over two weeks…yes!…and I suppose I should start packing! Once we close I will post some pictures of the new digs.
Last Saturday, we had a photo shoot for the Minnesota Genetic Counselor’s Association (MNGCA). They are in the process of revamping their website, and asked our family…along with seven others…to come in and share our stories about living with genetic disorders/diseases. Once their new site is up and running I’ll post the link :)
Dan, of Daniel Dunlap Photography, was gracious enough to take a family portrait (& many shots of Gavin!). Please, check out his website by clicking HERE. He was uber friendly, and took some great shots of the entire group!
This upcoming Saturday, we have our annual Great Strides Walk around Lake Calhoun in Minneapolis. We will have THIRTY people walking with us this year! I cannot wait, and I hope that the weather holds up. We will be wearing the same shirt design as last year (which you can see Gavin wearing in the header of this blog).
It’s not too late to donate! Just click the link below!
We will also be donning red ribbons & carrying red balloons to support seven year old Conner’s fight against CF. He was recently placed in hospice and has been given just months to live. Josh Mogren and I started up the event, Red for Conner, and we have people from all over the world participating!
If you would like to participate, you do not have to be a part of Great Strides. If you see something red, or wear something red…or dress your kiddos up in red…please send me a photo to firstname.lastname@example.org
I am compiling all of the photos to send to the family and will share them all in one place once all pictures are collected. The huge results are just simply amazing!
Click HERE to read more about Conner’s story.
And, the Parents Magazine Cover Contest. I have an AMAZING CF family. They have all been supporting us through facebook! Today, we are in 10th place out of thousands…but we can do better! It takes just a second to vote, you don’t have to register. Just click “vote” and it will ask you to verify a sentence to avoid spammers. 10 seconds of your time is all it takes.
This would be a tremendous opportunity to spread CF awareness. HUGE opportunity. A FREE opportunity! If we make it past this round, aka win this round, we’d have the chance to go to NYC for the FINALS!
Please click the photo below to go vote!
And last but not least, the Ambassador’s program for Minnesota Clinical Research. We’re hopefully starting things off with a bang! at the walk this weekend!
We’re a group made up of 3 adults with CF, three families with children who have CF, several CF doctors and the research staff. It’s an idea that the CFF is testing out with three different chapters across the country.
We are here to help families to better understand Clinical Research and why it’s essential for our community. In the next couple of years there will be a huge explosion of new meds, treatments etc. and we NEED them! But without participation in research trials, they’ll never reach the general CF population.
But more on that later…this post is long enough and I’m tired of typing :)