OBX Great Strides for Cystic Fibrosis

Nate Great Strides from Nathan Lawrenson on Vimeo.

Mauli Ola Foundation

There is a big surf contest this weekend on our beach.  The charity sponsor for this event is the Mauli Ola Foundation.  Tricia and I first heard about Mauli Ola from our dear friend Emily Haager...you might remember me posting a few photos of us with Emily from a several years back whenever her family would vacation here from California.

We again heard about Mauli Ola today from another CF family (the Whiddons) who have become friends of ours recently...they told us that some of the surfers and MMA athletes who work with this organization were in town for the event this weekend.  We found out that they were going to be at one of our favorite local restaurants tonight, so we took the kids and met our friends for dinner.  The Whiddons introduced us to Kala Alexander and Nissen Osterneck.  They were both super nice...Kala remembered all of our names, and they both signed autographs for the kids and talked with Tricia a while about her CF.  We're hoping to hang out with them tomorrow during the contest, maybe even do a little surfing with them if the waves are up.

 Make sure you check out this video and see what Mauli Ola is doing for kids with CF!  And, see our friend Emily, who passed away a few years ago, around the 1:27 mark.

Newspaper Article

Tricia and I were interviewed for this newspaper article last week. Take a look, and please consider praying for Jason and others who are waiting on the transplant list. And, consider becoming an organ donor...the only reason there are 110,543 people on the list today is because there are millions of people in the US who are not organ donors.

Nate

"Brilliant" CF Video

Tricia and I love this video...what a great way to explain what Cystic Fibrosis is...the cute British accents don't hurt...



Nate

$250k Grant for the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the leading vote-getter for a $250k grant from Pepsi! Read about what the money would be used for and vote for the CFF HERE! Voting continues through the end of October, and there are 30,000 people in the US who could use your help!

Nate

Great Strides Outer Banks 2010

CF Telethon

A childhood friend of mine now works for a NC television station that holds an annual telethon for Cystic Fibrosis every summer (read more about that Here). Pat met up with us a few weeks ago to film a short clip that was shown during the telethon (see below). I thought you might like to watch it...you might also like to know that the telethon raised nearly half a million dollars for CF research!!!



On a related note, a young CF girl named Jaimee passed away yesterday just a few days after receiving her long-awaited double lung transplant. Jaimee is the cousin of a dear friend of mine...she leaves behind a husband and an awesome extended family who could really use your prayer today.

With another death in the CF community, I'm reminded more than ever that there is still no cure, but that we are getting closer every day to finding that cure and making a HUGE difference in the lives of thousands of CFers around the world.

Thanks.

Nate

Sinus Surgery Today

Tricia goes into surgery at 11:45 am today.

Sinus surgery is very common for cystic fibrosis patients, and even more common for lung transplant patients. In fact, it's surprising that she's made it this far out from her TX without the surgery.

The purpose of the surgery is to both open up her airways a bit and to prevent nasty bacteria and other stuff that could be harmful to her delicate lungs from finding a comfy place to hang out. It is often a rather uncomfortable, if not painful procedure that must be repeated every so often, but Tricia's surgeon is very progressive/cutting edge and has had great success with minimal pain/discomfort and very few repeat customers.

Obviously, anytime you're drilling around inside your head, there are risks of damage to the eyes, skull, brain, etc. The procedure may take several hours, but hopefully Tricia won't be required to stay overnight...we're still hoping that 2010 will be the first year of Tricia's life that she hasn't had to spend a single night in a hospital!

Thanks for your prayer! And, please, don't share your scary sinus surgery experiences here...Tricia is not encouraged at all by reading about how this might not be a fun experience.

Nate

Next Stop, France!

Tricia and I are leaving tomorrow (Tuesday) morning for France on our one-week mission trip! This is, in itself, exciting enough...but, what I really want to post here on my CFHusband blog is that my band will be playing a concert for the local Cystic Fibrosis Foundation in Grenoble, France this Friday! Tricia and I (with the help of some talented interpreters) will be sharing a bit of our story as well!

Our contacts with the local French churches have friends who have a child with CF, so it was an easy fit for us to plan something to help them raise local awareness and support. Needless to say, we are stoked at having this opportunity!

If you're interested in learning more about our trip, our mission and our team, please visit our Team France Blog! I doubt I'll have any time to post here while on our trip, and probably won't be posting much on Facebook or Twitter either, but we're going to attempt to update our France Blog at least once a day during our trip with stories, photos and videos.

Thanks!

Nate

65_RedRoses Documentary PreSale!

The DVD of Eva's documentary, "65_RedRoses" is now on presale through the end of May! I'm ordering my copy today Here. I've seen an abbreviated version, and can't wait to see the rest!

Eva did more than just about anyone else I know to raise awareness of Cystic Fibrosis and Organ Donation during her life, and with this film, she'll continue to do the same for a long time coming.

Nate

Goodbye, Sweet Emily

Less than two days after Tricia and I watched Eva's online memorial service together, we received the news that our beautiful friend, Emily Haager has also past away.

We had the honor of meeting Emily a few summers ago...I'm pretty sure she and her family are the only people in the world who travel every summer from the west coast of the US to vacation on the tiny island of Ocracoke, NC. Last summer, Tricia and I made it a point to spend the night in Ocracoke while Emily and her family were here. We had a great time with Emily and the Haager family, and we were looking forward to seeing them again this year.

Here is a video that explains part of the legacy that Emily leaves behind for her family and friends, and the entire CF community.

I know Emily's family would appreciate your prayers today. Tricia and I would also appreciate your prayer. It's been a tough winter for Tricia and the CF...we have lost so many friends to Cystic Fibrosis.

Nate

Radio Interview about Eva

A Canadian station interviews one of the filmmakers of Eva's documentary, "65_RedRoses". A great insight into Eva's passion for CF and Organ Donation awareness.



The documentary is not currently available on DVD, but hopefully it will be very soon. I've seen an edited (shorter) version of the film, and it's amazing!

Nate

Eva's Legacy

Goodbye Sweet Eva

Our beautiful friend, Eva Markvoort passed away this morning.


I first came to know of Eva just a little over 2 years ago and have since blogged several times about her. She received her double lung transplant not too long before Tricia received hers. Tricia and I have been able to spend the past few years, thanks to the internet, getting to know Eva as a friend. It has been amazing to watch her truly take advantage of her second chance at life...I've never known anyone as uniquely open about her joy for life as Eva.

It's also been an honor to be able to encourage and pray for Eva and her family over the past several months as she has continued to live as joyfully as possible while dealing with chronic rejection and hoping for another transplant. I can't imagine the journey they've had the past few months, and am full of mixed emotions right now, hurting for her family and very thankful that Eva is no longer suffering. Although she did not received her transplant, she does have new lungs today.

Goodbye, sweet, Eva! We will miss your gritty poems and your crazy photos and your silly videos. You were so kind to us, and we are very thankful to have called you friend. We love you!

Nate, Tricia & Gwyneth Rose

Pancake Dinner!

It's that time of the year again!

Grits Grill is hosting our first Cystic Fibrosis fund-raiser of the year this Friday! And, this year, we're changing it up a little. Purchase a ticket by this Friday, and you can either redeem it on Friday night while Tricia and I serve you some awesome pancakes, OR, redeem it anytime during Grits Grill regular hours of operation during the next month!

And, this year, along with pancakes, we'll be serving up some Sea-Freeze slushies to anyone who just stops by to say "hi"!

Nate

Please

Please, please, please. Pray for our friends Eva and Emily. Both are very bad off right now.

Eva is still hanging on, as always, making the most of life.

Emily is fighting an infection and has just been placed on a ventilator, which is never a good thing for a CFer.

We love these two girls very much, want nothing but the best for them, and always have hope. CF sucks...it's so hard to watch people you love so sick and so close to death. God is good all the time, but this still isn't easy.

Thanks.

Nate

We love you too, Eva...

Please, Please, Please. With tears in my eyes, I ask you to pray for my friend Eva Markvoort today. Just a warning that the following video is very real and has some very serious content.

Our Friend, Emily

Tricia and I met Emily two summers ago...she and her family are from CA and vacation on the OBX for a few weeks each summer. Emily, like Tricia, is in her late 20's and living with CF. This past summer, we were able to spend several hours with Emily and her family, making life-long friends.

Now, Emily needs our encouragement and prayer. She's in the ICU at her local hospital with more than one infection, and she's not doing well. We would greatly appreciate if you'd pray for Emily today.

Thanks.

Nate

Rough Winter

The cold, germy months of winter are the toughest for CFers, especially those who are already hanging by a thread. Just in the past few weeks, I've read of a half-dozen CFers passing away, some who were waiting for their new lungs.

Please, take the time to pray for the Cystic Fibrosis community this winter. And, if you haven't already, please, please, please, consider becoming an Organ Donor. Here are a couple of quick Organ Donation & Transplantation facts:

> There are over 100,000 people, the size of a small city, on the transplant list in the US.

> There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

> In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

> From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

Nate

Pseudomonas

Just a quick update to let you know that Tricia's recent lung issues are due to a pseudomonas infection, a common bacteria that tends to plague many CF patients. She was in the hospital for just a few days, home in plenty of time for Thanksgiving, and feeling back to normal now, on home IV's for another week.


Thanks for your prayers! BTW, The Blind Side is an outstanding movie...go see it!

Nate