, , , , , ,


Yesterday this box arrived via Fed Ex and I wanted you guys to know about it because it involves many of you! This is my first month’s worth of a brand new medication for treating Cystic Fibrosis – Orkambi. Throughout my life, many of you have prayed for my health (and my brother Mark’s) and given financially to CF research. I even participated in a Phase Two study for this med. So to be able to show you that it’s HERE is pretty fun!

In some ways this is just another new med, of which there have been a handful in my lifetime. We have been advised that the positive changes to our health will most likely be slight. But positive change is worth fighting for on any level, right?!

In other ways, this new med is different from any others. It is a pill (YAY, not another aerosol!), which I’m happy about! Also it is not an antibiotic or something that treats symptoms. It actually works against CF at the most basic level (so specific, right? Sorry, I haven’t had my coffee yet). This is a big step forward research-wise and closer to correcting the gene problem than anything before it. So that’s exciting!

Thanks for investing in CF research. My cousin’s (8 year old?) son told me this week that I’m “so mature” (heh) — obvious proof that CF is not a “children’s disease” anymore like it used to be!

Sleeping Bear Dunes and a Job Update


, , , , , , , ,

Sleeping Bear Dunes

You guys. First, HE GOT THE JOB!!! But while writing this I can’t help but be super distracted by these photos. Have you BEEN to Sleeping Bear Dunes? We went last weekend while we were up north, and I haven’t been able to get it out of my mind. I guess it’s pretty easy to see why.

This was the perrrrrrfect distraction from waiting to hear about a job. Can you imagine anything better?

Sleeping Bear Dunes

SO. If you don’t know what I’m talking about, scroll back to the last post to get the background info.. But Josh just found out that he is the new director of Upward Bound at GVSU! He is happy and relieved and ready to just, you know, do work. He’s been the interim director for a while and he’s been edging into the job for years now, so in some ways this is no biggie. BUT. The issues that swirl through offices and programs and universities and committees were real, and they could have derailed everything. So thanks for your prayers during this time of upheaval! It’s been a crazy ride.

Josh did have a binder full of people who wrote letters of recommendation, notes of support from students, and all sorts of incredible proof that he’s right for this position. I believe that God has gifted him generously with the right type of abilities to work in these environments- the classroom, the office, the university, the state-wide organization, and the nation-wide organization. And I’m SO thankful that he gets the chance to utilize these gifts where he WANTS to. Know what I mean?

Sleeping Bear Dunes National Lakeshore

So anyway, there’s that.

I’m really sorry to the people who are reading about this for the 45th time, after Instagram, FB, or personal conversation.. But thanks for hanging in there!

Sleeping Bear Dunes Selfie

P.S. ALSO. He got his braces taken off today! This guy right here is living the LIFE right now, I’d say.



, , , , , ,

Processed with VSCOcam

Oh geez, I’ve been neglecting the blog again. UGH. Sorry, guys.

I wanted to let you know, though, in case you haven’t heard – Josh has a big job interview tomorrow. He has been working at Grand Valley State University for the Upward Bound program for 11 years now and tomorrow will be interviewing to be the director of the program. (He gets a lot of questions about what he “does”. Right now he spends about half his time teaching/tutoring in two different high schools of Grand Rapids Public Schools, and the other half doing administrative work for this program. To qualify for the program, the high school kids must either be from a low income home or be (future) first generation college students.. Most are both. The point of the program is to support these students and prepare them for college.)

He has been burning the midnight oil for days preparing for this interview, and tomorrow’s the day! So we would greatly appreciate your prayers. Given everything he has done for the program and the university, and the schools, and the students, he should be a shoo-in for the role. (There is a whooooooole lot I could say here, obviously!) He is even the interim director now. BUT unfortunately it isn’t that “easy” and university politics and agendas have a very real chance of taking over. So if you would, just pray for the best for the program and for Josh’s life.

Thanks guys! Interview’s at 1:00 tomorrow (Monday), we’ll keep you posted –┬áhopefully with good news!

Two More Days!


, , , ,


Hi everyone! Just a quick reminder to anyone who wanted to join us at the Great Strides Walk on Saturday.. It’s only two days away! It’s looking like our team will be a little smaller this year, so if you’ve been on the fence about coming, please do!

Click here to either join the team or make a donation

Thank you so much for your consideration!

We’re expecting a new medication to become available this summer that is a direct result of this fundraising and important research. One of many that have come on the scene just in my lifetime. I love knowing that our $ ends up helping people (myself included). Isn’t that the point?

Let me know if you have any questions about the walk on Saturday!

A Few Days in Florida


, , , , , , ,


A couple weeks ago I had the chance to spend a few days in Florida with my good friend April. She lives in Nashville TN and I live in Michigan and our times together are far too rare and fleeting for our liking. So we scheduled a few days at her parent’s place in Naples and met up in Florida!


We both almost cancelled at the last minute, for different reasons, and I’m so thankful we didn’t. Some things are worth fighting for, right?!


It turns out that I had just started oral antibiotics before the trip so I actually had to stay out of the sun (HA). We focused on other things like shopping and eating and it all worked out.


Naples has a ton of resale shops for things like furniture and home decor and we went through a bunch of them. There weren’t a lot of things that I would look for personally, but that made the hunt that much more rewarding when we saw something good. Like this mid-century chair (below)! Josh & I love to shop this stuff wherever we are because it keeps us educated about pricing in different regions, and b/c we think it’s fun. So we took this pic for Josh.




We swam at sunset (no sunburn!) and air-dried in the warm breeze – total bliss!



We also did a bunch of shopping – I bought jersey pants (when in Rome – they were EVERYWHERE) and child-size sunglasses for my child-sized face. But can I get a fedora to fit my giant head? NOPE. Figure that one out. Ha!




Aaaand I also bought this set of side tables, which I crammed into my carry-on suitcase for the flight home. Of course I did. In my defense, April told me to. Peer pressure is still a thing in your 30’s. I know that now. But Josh loved his souvenirs so I feel less ridiculous.

Thank you April for such a fun trip! We laughed, we cried, we laughed til we cried… And we probably convinced our Uber driver (on the way to the airport) that we weren’t mentally fit to travel and were more suited to a padded room somewhere. That has been true of us if I’m honest, just not this time.

My apologies to those of you who follow me on Instagram (@suzannebrandsen) since you’ve already seen a bunch of these pictures! Thanks for hanging in there…

Great Strides Walk 2015


, , , , ,

Team Steppin' Up 2014

ONE MONTH! That’s it! That’s all we have until the Great Strides Walk in Grand Rapids this year. The date is Saturday, May 16th, the walk starts at 10 a.m. I hope some of you local pals can join us in this effort to raise crucial research dollars with the Cystic Fibrosis Foundation. Asking for money and/or walkers never gets easier, but every year it becomes more significant in my mind. So THANK YOU to all of you who have ever donated and walked with us. It is always appreciated.

Last summer I never sent out TY notes to the people who donated. I’m sorry! But hey, keep sending the money. That way the new treatments will keep rolling in and I’ll be healthier and more able to thank you properly. UGH HORRIBLE JOKE.

My POINT is that no one knows yet how much these people in the photo above along with MANY other generous folks raised in 2014. Our highest amount ever – a whopping $3445!!

Thank you for that. Do you feel thanked yet? Well, I hope you do.

So. For those who are interested in joining in this year, one way or another:

Click here to make a donation or join our team – Steppin’ UP


..too much?

Hope to see you there!

P.S. The GR walk is at Johnson Park this year! So if you show up at the Calder Plaza, you’ll probably end up walking for a different charity. Which, you know, still, good for you!

Design Sponge Home Feature


, , , , , ,

Hey guys, guess what? Our home is featured today on Design*Sponge!

Design Sponge Home TourBasically we did a photo tour through our whole house and they selected which ones they wanted to use on their site. It’s been fun and a little crazy to think that a million people could virtually be hanging out in our living room today.

Check it out here!

Two Hours of a Snow Day in February


, , ,

Last month I had Thomas and Jane over one morning on a snow day. Usually it’s just Jane because Thomas is in school, so it was pretty exciting to have him too. He even dressed up in part of his Halloween costume (train conductor) for the occasion.

Mom was about to leave on a trip to see family out West, and asked if I had any recent pictures of the kids (not really!). So, this snow day in February ended up being the perfect time to catch up on that and get some pictures together in a book for Mom to bring on her trip. They may be blurry and out of focus but I think you’ll get the idea.

These two goons are SO much fun.

Thomas and Jane

Thomas and Jane

Thomas and Jane

Thomas and Jane

Thomas and Jane

Gumball Machine

Thomas and Jane

Thomas and Jane

Thomas and Jane

Jane and the Piano

Thomas and Jane

… Oh, hey Parrot. Should’ve known you’d sneak in here.


Fun Facts About Saguaros


, , , , , , , ,

  • They can live 150-200 years
  • They can grow to 40-60 feet tall
  • A 10 year old Saguaro can be only 1.5 inches tall
  • They don’t grow arms until they are between 60-70 years old
  • They are exclusively found in the Sonoran Desert
  • And our house.

Saguaro CactusSo, last month we took a trip to Arizona. We did some touring around in the desert and frolicked among the Saguaros. Little did I know that Josh (bless his researching heart) had become really fascinated by these guys. He found one on Craigslist that was an hour away, and well, it’s now sitting in our dining room. This is Mexico (named after his homeland), and he is 35 years old.

If this isn’t crazy enough for you yet, Mexico needs to be re-potted. Just think about that for a few.

What’s the weirdest things you’ve found on Craigslist? I think I need a support group…


Get every new post delivered to your Inbox.

Join 476 other followers