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20180423_115803

Hi! Lots of news to share today, so why not dump it all here?

First, many of you are faithful supporters of the annual Cystic Fibrosis Foundation’s Great Strides walk, either in person or by donating. Thank you for that! This year’s walk is coming right up and we’d love to have you back. It is Saturday, May 19th with registration at 11 and the walk at noon. The location is still Millennium Park Meadows Pavillion. Here’s a link to my page where you could sign up to join us or make a donation. Thank you in advance!

On that note, your research money has contributed to a new medication that (my brother) Mark and I have recently started. It is a twice-a-day pill called Symdeko, and it’s a big deal. It is the second medication that we’ve had that treats the disease and not the symptoms, which is huge and groundbreaking as far as treatments go. The first one, Orkambi, didn’t work out for me. It had negative side effects that took away any benefit for me. This one is kind of like Orkambi minus the negatives, and I felt a difference as soon as I started taking it. Mostly I noticed things like improvement in my swim and being less out of breath going up stairs. It’s not changing my life in a big way BUT the fact that I can feel it helping me is a new, foreign, WELCOME feeling. We are so grateful for this new treatment! My doctor describes the next one coming (probably a couple/few years out) as hugely impactful, so keep those donations and prayers coming!

I have other happy news to share about Mark AND Jess. Mark was very sick this winter with the flu and then pneumonia, and he spent significant time in the hospital. A couple of weeks ago he had a follow-up with our doctor and he has recovered to where he was before getting sick! If only we could have seen April in January. Ya know?

Clara Turns Two

And Jess, who has struggled with migraines and other health issues for the past two years+, is feeling much better and has just been cleared by her migraine specialist to return to work. Her boss has been hoping to hire her back and HELD HER JOB for her as an oncology social worker. She is working 20 hours a week for now as she acclimates. She is thrilled to back in her old position and has been getting lots of affirmation from co-workers. Also, “Baby” Clara just turned TWO last week. How?!

For myself, I’ve had a good spring. Of course I’d love to breathe better but I’m holding steady right now and I’ll take it! Josh and I didn’t do any traveling this spring and it’s starting to sound like a good idea. Right now we’re dealing with a robin who eeearly every morning bashes into our bedroom window, waking us up before we’re okay with it. And we’re still so happy it’s spring! Thank you for those who loved on our family this past winter – and beyond – as we’ve done some hard living. We are so grateful to God to have happy news to share!

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