Saturday, August 23, 2014

A Book of Hope

About a year ago, a learned about a project that another parent advocate in a different disease community had been working on. He had asked the question of some of his peers, "If you could, what advice would you give to someone who was newly diagnosed?" The response he got was overwhelming, and he created a Book of Hope for the IBD Community.
Fast forward to this July when I was told that had sufficient resources to create and distribute this same booklet completely free of charge for another disease community, and asked if I thought that it was something that CF patients and families would embrace. It was a no brainer. I asked this question to other CF patients and families, "If you could, what advice would you give to someone who was newly diagnosed?" The response that we got was again overwhelming, and we created a Book of Hope for the CF Community. It's in the process of being printed, and will be distributed absolutely free of charge to anyone wanting a copy starting in early September. I hope you like it!
 (*Don't worry, this version has been every so slightly edited so that the print version will be void of grammatical errors.)

Thursday, August 21, 2014

Our Story in US News & World Report!

Unfortunately I don't have an electronic copy to share right now, but this week US News & World Report published it's Best Hospitals 2015 Edition and we're in it! My favorite line in the whole thing is this: "Moore's experience, on a small scale, hints at the possibilities." Yes, it sure does, and those possibilities are endless!!

Thursday, August 7, 2014

Oh, hey August!

Well that summer just flew right past us now didn't it! We were on vacation for the month of July, and it was oh so good. We packed up and shipped out on July 2 for a week in Stone Harbor, NJ. That week was simply delightful. I don't usually have high expectations for vacations, with everyone in different beds and on different schedules, but this one just worked. We had a house with a pool and were 3 blocks from the ocean. The weather cooperated in the most fantastic way, with cooler temps and no humidity. We cooked meals at home and took naps everyday, and it all just worked out.
From there we headed north to Philadelphia for two weeks on the farm. We got to see friends that we only ever see once a year on our annual trip "home". I had a little getaway with a good friend to the Spa at the Hershey Hotel (if you've never been, I highly recommend it!) We had a Party for a Cure Fundraiser and raised $2000 for the CFF. I worked a little bit here and there (more on that soon), and we just had a really nice two weeks in PA.
My People

We ended our month-long extravaganza with a trip to Waterford, CT to visit my husband's family. I love New England and all things New England-y. We went to the beach, toured a submarine, took a ferry to Long Island to see some friends, visited with cousins, and enjoyed our last week away from home.

By the time that our visit to Connecticut neared it's end, I think we were all a little hungry for home. We packed up the car last Friday morning and headed west, and just 13 short hours later (or the equivalent of Frozen about 8 times) we arrived back in Cincinnati. It was very nice get home on Friday and have the weekend to get reacquainted with our home and our city before jumping back into the world of non-vacation living.

For anyone who follows this blog with any regularity, you'll be happy to know that we made this trip without a hospitalization. CF did not interrupt our vacation like it did last year and the year before. Perhaps that's what really made this trip a completely relaxing and rejuvenating one. Drew got sick when we got home, but just for a day. We've found a treatment plan that seems to work when he starts to get sick, and I'm so grateful for that.

I don't even know where to start with sharing about all of the wonderful things that have been happening in the world of patient engagement and advances in collaborative care for CF. I've started but haven't finished about 4 posts on all of that awesomeness, so stay tuned because I have a lot to tell the world about!