Tuesday, May 29, 2018

CFLF

Last fall, Olivia received a recreation grant from the CFLF, Cystic Fibrosis Lifestyle Foundation.

These $500 recreation grants are given out to recipients with CF in order for them to be able to participate in a physical activity that's benefits go beyond that of just physical. Olivia used her grant towards her dance classes for the 2017-2018 school year. The benefits that Olivia gains from participating in dance are beyond that of just exercise. She's building relationships with others, learning about teamwork, how to follow order and direction. She's discovering things about herself; likes, dislikes, things she does well at, things she needs to work on.

We know that CF is a complex disease. We know that while it wreaks havoc on all parts of the body, the lungs are of the utmost importance. We know that in order for a cure to be beneficial to Olivia, her lung function has to be maintained. We know that CF is a progressive disease that gets worse year after year.

Exercise is good for all of us, CF or not.

As Olivia was lucky enough to be selected as a grant recipient, I've been lucky enough to get to know more about this organization and receive news about it from their newsletter. As Jeff and I were reading through the most recent newsletter we both agreed that it's a pretty awesome organization.

The founder, Brian Callahan is now 42 years-old living with CF. Pushing himself hard through exercise, not only are his lungs thriving but his lung function is actually increasing, back up toward the 100th percentile with a disease that destroys lung function progressively. How amazing is that?!

Here are a few tidbits from the CFLF newsletter that I found were really compelling and too good not to pass along. Pay close attention to the paragraph in pink. When I read that, not only did my heart skip a beat but I realized it's so true of Olivia as well. It fits her to a t. No matter what kind of junk is thrown her way, no matter what she has to endure, she still is optimistic, strong, loving and courageous, through it all. She's so much better of a person that I will ever be and for all that she has to live through every single day of her life, that she takes in stride, she'll always, always, always, be my hero.

"What does "awareness" mean? Is it just hearing the words cystic fibrosis? Or is it understanding the genetic lung disease that also affects the digestive system, endocrine system (diabetes), reproductive system, the liver and kidneys? Or is it understanding the lived struggles and challenges faced at times by me and 30,000 others in the US and 70,000 worldwide including chronic anxiety, depression and emotional isolation.

The undying optimism, strength, courage, joy and love that emanate from a person with CF is something that you will never forget. Especially when they are faced with the most pain, worst prognosis, or even end-stages there is a hope and appreciation of every moment of every day that pierces through it all. 

Cystic fibrosis as a lifelong progressive condition does not have a cure, remission or break from the weight we carry. Good news is cherished and critical to maintaining hope and a positive mindset. The CF Recreation Grants provided by the CFLF are one instance of good news that impacts the lives more broadly than the exercise itself."

Click here to read the entire CFLF May Newsletter



My heart and soul and fundraising efforts will always be with the CFF, the organization that is working toward a cure for Olivia and all those with CF. However, because the CFLF organization is also helping those with CF to live longer lives now and because they awarded Olivia a grant, Jeff and I are also supporting this foundation. 

If you are in need of donating to another worthy cause, it's definitely one worth looking into. 




Tuesday, April 10, 2018

2018 CF Climb - TOP TEAM

I received word yesterday from Megan at the CFF that not only was Team Olivia-Polaris the TOP fundraising team for the Minneapolis CF Climb for 2018, but that we are currently the TOP FUNDRAISING TEAM in the nation!

HOW COOL IS THAT!?!

Out of 15 climbs in 2018, some have concluded, others are later this year but to be the top team in the nation at all, no matter how long the length of time . . . is pretty darn cool indeed!

To think of our little team made up of family and friends when we started out in 2010 to how big and influential we've become today . . . is super amazing.

A big thanks again to all of you who made this happen: everyone who donated to our 2018 CF Climb event, all of our team members who joined us in climbing, the Polaris Foundation for their matching gift and to all who joined us in 2017 for the Dreams for Olivia golf event that made our 2018 climb a huge success.


The 2019 CF Climb will mark our 10th year . . . what a milestone and my oh my how much has changed since then. 10 years is a big deal, the kids and I are already brainstorming ways to make this next years climb one to remember!



Thursday, March 8, 2018

2018 CF Climb RESULTS #1

The 2018 CF Climb for Team Olivia-Polaris was a huge success.

Let's cut right to the chase . . . check it out!


WE DID IT!

5 years in a row we have been the HIGHEST fundraising team for the Minneapolis CF Climb! I already have this awesome award on display, next to the other 4 awards and our Golden Shoes. 😊 


I'm speechless.

It was a very close call between team DINOmyte and Team Olivia-Polaris, both fighting for that #1 spot, and in-fact, on-line DINOmyte is ahead of us, but we were able to inch past them with our $4,383 check from the Dreams for Olivia Golf event and the $3,000 matching gift from the Polaris Foundation. The total that Team Olivia-Polaris raised for the 2018 CF Climb will be somewhere right around $18,500!!!

I'm super excited that we've won this award 5 years in a row. Although, as I told Landen in all his super competitive self - it's not about what place we get, it's about the money that's being raised by every team, every person, that goes to the CFF to improve the lives and ultimately cure all those with CF.

I'm super excited that year after year after year we are sill able to raise this much money and that people continue to donate. 

I'm super thankful for all of you out there that continue to climb with us and work tirelessly to get donations. 

I'm beyond proud to be a part of Team Olivia-Polaris

THANK YOU!


2018 CF Climb - TEAM OLIVIA-POLARIS


What an awesome event and awesome day. Thank you again to all who climbed and to all who donated.


While the big group climbed, Olivia got to hang out in the tent with her BFF Makayla and she had been looking forward to it for so long!


Landen and I climbed ahead of the big group again this year. We climbed a little bit slower this year, stopped to take some video for Olivia as she has no idea what the stairwell actually looks like and of course had to snap a few photos.  


Proud of our team signage

just because, we do this silly photo every year

*stay tuned for part #2, word is the Rocky Mountain Climbers had an eventful climb with upwards of 40 to 50 mph winds, craziness. More details and Cole's video to come. 




Wednesday, February 28, 2018

2018 CF Climb - Details for Saturday

If you will be climbing with us this Saturday for the 2018 CF Climb here are a few details.

2018 CF Climb
Saturday, March 3, 2018
9:00 am to noon
IDS - Minneapolis, MN


General Climb runs from 9-noon. Last climbers will be sent up at 10:15.

Landen and I will be climbing before the large group/team to be able to wait with Olivia while the team climbs so he and I can watch coats and/or personal belongings.

We are asking that climbers be to the IDS by 9:30 for a team photo prior to climbing.

You are welcome to climb anytime after 9:00 am. If you want to climb with the team/large group, they will proceed with the climb around 10:00 am.

Since our team has raised over $5,000 we will have a "Team Tent" set up in the Crystal Court with seating and snacks, please come early to enjoy that.

If you have any questions, please let either myself or Jeff know.

*Currently we are the 2nd highest fundraising team for the MN Climb, we are about $1,500 behind DINOmyte Climbers. 

With the Polaris Matching funds and the donation from the Dreams for Olivia Golf event . . . we MIGHT pull ahead and claim Highest Fundraising Team for the 5th year in a row.

Stay Tuned.



Thursday, February 22, 2018

2018 CF Climb - Shout out to our 2018 Team

Week 6 and the last of my CF Climb shout outs goes to . . . Team Olivia-Polaris for the 2018 CF Climb!

Thank you to all of you who have joined us and will be climbing on behalf of Olivia in 2018.

It's true, major changes are coming to CF. New drugs, better drugs. Symdeko was just released last week and the CFF is moving at a fast pace to get these drugs to those that desperately need them.

Jeff and I were told by our CF research study pulmonologist late last year . . . 3 years, the drugs in the pipeline coming in 3 years are life changing.

Jeff said that's a long time, I said it'll go by so fast. We are both right; 3 years will go by in the blink of an eye but with a disease where time is not on your side, 3 years is a very long time to wait, so much can happen.

With the momentum surrounding the CFF and all the good things that are here (Orkambi and Symdeko) and all those yet to come down the pipeline it's easy to think positively and optimistically about the future, it's easy to think that we can spare some time, that we can spare some money.

Unfortunately, with CF, there is never enough time.

For those with CF, young adults and even kids, fighting right now at this moment to hold on to life . . .

For those with CF waiting on the lung transplant list, with rapidly declining weight and lung function every single day, . . .

For those with CF doing well now . . . and in the blink of an eye life takes a turn for the absolute worst . . .

3 years is too long. 3 more years of life may very well never come. 

For me, I believe that 3 years will fly by, but there is no guarantee that just because Olivia is doing well now, that her CF won't take a turn for the worst. There is no guarantee that she will will be here in 3 years. It pains my heart, so very much, to type that, to think that, to know that, unfortunately it's truth.

It's truth because CF is a beast, an awful beast and disease in which things can go from ok to awful in the blink of an eye. We've seen it, we've read about it, heard the stories and we lived it in May of 2016 when Olivia went in for a pre-surgical check up and was immediately admitted to the hospital.

3 years.

CF has taught me to never take a single day for granted.

I hope and pray to God that Olivia is here and healthy enough in 3 years to benefit from these life changing drugs.

I know that just because there is very REAL hope on the horizon that it doesn't mean that I can do less fundraising or giving to the CFF now.

Again, I applaud and virtually hug each and everyone of you who continues to step up and DONATE to the CFF or climb with us. The support that we had 9 years ago at the start of this journey and continue to have today shows that so many of you get it too. It shows that I know, that you know, that we have to keep up the support of the CFF with the hope that 3 years, becomes less than that.

I know that I fight everyday for Olivia, but I also fight for every other person out there that has CF. I fight because I know that my daughter might be fortunate enough to know a CF that is unimaginable right now but so many others with CF won't.

I fight because life for those with CF will never truly be okay, until a cure is found. I fight because CF is a disease that affects entire family's. I fight for all those that have paved the way of what CF is today and those, like Olivia doing research now, that are paving the way for what CF is of the future.

I fight because there are so many with CF that never got the chance.

I fight because I live and see everyday how CF affects Olivia, Jeff, Landen and myself.

I fight because Olivia will always have CF and I will never stop fighting against it.

Once again, thank you to all who've joined us, all you who continue to climb and most importantly to all of you who have donated to the CFF.

Cheers and many thanks to our 2018 climbers:

2018 CF Climb Team Olivia-Polaris
Amber Beach
Larry Beach
Loren Beach
Braelyn Branby
Joseph Dowdle
Darci Fiala
Austin Jass
Carter Jass
Makayla Jass
Emily Jass
Steve Kruger
Tyann Marcy
Cole Naymark
Connor Nelson
Jarett Nelson
Kyle Nelson
John Scheierl
Corey Simonetta
Jennifer Simonetta
Justin Smoker
Diane Tavegia
Lisa Thackeray
Jeff Wolf
Bridget Oltmans
Jeff Oltmans
Landen Oltmans

Thank You. Seriously, thank you so much.

If you are still interested in climbing with us you can join the team all the way up until climb day on March 3, 2018.