Monday, February 29, 2016

2016 CF Climb - IDS Tower

The 2016 CF Climb was one full of unexpected, pleasant surprises and big things for Team Olivia-Polaris!

Here are a few stats:
* We had 60 registered climbers for 2016!
* In terms of registered climbers, we had the largest team.
* We were once again, for the 3rd consecutive year, Highest Fundraising Team for this event!
* With the matching gift from the Polaris Foundation, when all is said and done, we should have
   raised right around $20,000 for the CFF on behalf of Olivia for the 2016 CF Climb!

Wowwie, wow, wow! Isn't that amazing?! I sure think so.

This year was one of my favorites by far for this event, for a few reasons. Year one of the climb, I was ticked off and completely defeated. CF was new, raw; it was scary and sad and so many not good things and to top that off, the week prior to the climb, Landen had failed his 1st sweat test, placing him in the "gray" area where I climbed to the top of the IDS tower, not knowing if we had 1 child with CF or 2.  It was quite an emotional climb - to say the least. Each year gets progressively better for this event and each year we look at it more and more as a celebration, and we therefore enjoy it more and more. The other huge reason it was one of my favorites is because every year, I always climb alone before the entire team climbs together so that I can sit with Olivia in the Crystal Court of the IDS tower, (and man all of our team's gear), and this year I didn't have to climb alone. I had my best bud climb with me this year:

Total aside, we don't usually look this crazy, and scrary, we were being silly for the photo and of all the selfies Landen and I snapped, this was the only one to turn out.

This was Landen's first year climbing and he did great! He beat me up to the 50th floor and had me climbing at a fast pace to keep up with him. He and I made it to the top in just under 17 minutes. He was super excited to climb for his sister and he was even more pumped that he raised over $650 for Olivia, (Thank You to everyone that donated to Landen). Landen said he can't wait for next year and that in 2017 he is going to climb twice, once with me so I don't have to climb alone and then again with the entire team. He's so sweet - Go get'em Landen!

This year again we were greatly amazed by all of Jeff's Polaris co-workers and friends that showed up to climb with us. We had 30 Polaris employees join our team this year which secured a $5,000 matching gift to the CFF from the Polaris Foundation!

Our loving family and friends continue to amaze us with their generosity and we have had so many of them continually support us year after year after year and it is always a great day to see those we love, near and dear, come out to this event to celebrate Olivia and the progress that the CFF is making. Olivia is really beginning to understand more and more about CF these days and when she sees the faces of those that are cheering her on, or hears about the donations generous folks have made, how we are raising money, everyone that supports her, she gets it, it makes sense and she feels pretty special.

One such person that made her day when she showed up to the 2016 CF Climb, one whom I'm pretty sure is her most favorite person in the world right now and she might even trump me these days, is none-other than her wonderful kindergarten teacher Mrs. Heath. When Olivia found out that Mrs. Heath would be climbing for her, it was all she talked about for the rest of the day and I know she felt on top of the world. Olivia absolutely loves Mrs. Heath, I've already told Jeff, I wish Mrs. Heath could move up a grade each year so she could keep teaching Olivia! So a huge thanks to Mrs. Heath and her husband for spending their morning with us, raising a very impressive amount of money for Olivia. We are blessed!

Each year as our team grows in size and we raise more and more money for the CFF, we are sincerely humbled. Humbled because all the money that we raise that goes to the CFF has the wonderful potential to do amazing things, to change what CF is, to change Olivia's life. Through fundraising and participating in research, we will keep pushing on with each and every year. The research study that Olivia is in currently lasts a minimum of 6 months and a maximum of 30 months. The team of doctors and researchers and coordinators who we work with are wonderful and they continually tell Olivia that what she is doing will change the life for so many other kids after her whom have CF and Olivia feels pretty special that she is doing that. She's an amazing little girl, one that continues to surprise me each and everyday and I continue to be thankful that to her CF is a disease that she has, but not who she is and the satisfaction she feels from helping others with CF is an amazing thing from such a little girl. I'm very proud and honored to call her my daughter, she's taught me a lot about so many things in 6 years and for all she is, and for all she does and for all she endures, she truly is my hero.

A big thank you to everyone who climbed with us this year and a very big thank you to every one who donated to support our team. Without you, none of this is possible and we can never thank you enough for your support of the CFF. We hope you too will find satisfaction and joy, knowing that your dollars are being put to good use, your dollars are changing the face of CF and we are living through this fascinating time in CF history, right now.

From the bottom of our hearts, thank you, thank you, thank you to all of you who climb and donate to the CFF on behalf of Olivia. We are forever grateful to all of you. 

Friday, February 19, 2016

MN CFF Chapter Update & Annual Volunteer Appreciation Reception

Last night, Jeff and I had the pleasure of attending the 2016 MN CFF Chapter Update & Annual Volunteer Appreciation Reception. We've been invited in year's past but because of sick kids or what have you, we were never able to make it. Thanks to Aunt Darci agreeing to watch the kids for us, we finally made it down for this year's reception.

The reception was held on the 50th floor of the IDS tower, that same floor we had just hiked to last Saturday for the 2016 CF Climb. It's a great view during the morning when we ascend to that height and equally as beautiful lit up at night.

The night consisted of a chapter update provided by a national rep from the CFF office followed by an awards ceremony. The update was so promising, full of hope and a future; it was great. We were told about the wonder drugs that are here now in Kalydeco and Orkambi. Orkambi is the promising drug that was released in 2015 for those in the CF population 12 years and older whom have two copies of DF508, the mutations which Olivia has. This is hope.

We were told that Orkambi alone has the potential to double a lifespan for a person with CF. Did you catch that? Double?! The current life expectancy for a person with CF is 41 years old. By no means do I believe that 41 years of age is a full life, it's not. But . . . considering where CF started, when it was a pediatric disease with children not living long enough to attend grade school, to where we've come today, I'd say it's a vast improvement.

Back to Orkambi . . . if CF patients lose about 2% of lung function every year and Orkambi can reduce that to 1% lost lung function per year, this can double that lifespan! That sentence right there, that is a very big deal. Even better yet, this drug is here, it'll be available for Olivia's age group soon. This alone makes my heart happy. However, the hope didn't stop there.

Orkambi is considered a "daily cure" if you will, pills that must be taken daily to alter the defective CFTR protein. However, the CFF is currently looking at "monthly cures" if you will, through the use of stem cells.  Now, given the CF life that I know and the journey I walk along beside Olivia, let me tell you, I think having to take a couple of pills each and every day as a "cure" compared to all the therapies and medications Olivia is currently taking is a home run, so can you even imagine what a monthly therapy/pill/cure would be like?! Amazing!

But . . . there is more, the CFF is searching further, they are looking into gene editing. This blows my mind. CF is caused by a defective gene and they are now exploring ways to alter that defective gene in utero so that the baby with the defective gene causing CF, will be born cured of CF! Can you imagine? I hear these things, and I know enough to understand some of it, but wow, it all makes my head spin, it's all so amazing! The best part is that the CFF is hoping to have this gene editing piece figured out by 2040. Olivia will be 31 years old. I can't even tell you what it will be like to watch this disease change so rapidly from the CF I know to the CF of the future.

I cry, happy tears, to know that the CFF is working tirelessly to really cure this disease, pioneering the way not only for CF but for so many other diseases as well. I definitely look to the future of CF with hope and optimism. CF is something I never would have chosen, never ever, but I am humbled and honored and proud to be able to devote my time and vest my interests fully into this foundation that is beyond amazing, this incredible foundation and all they stand for, a foundation that has the very real potential to change Olivia's life forever.


That "update" topped the night, my week . . . my month. It was inspiring and hopeful and it makes every dollar we raise for the CFF so vitally important and we can see the value of what our dollars are doing. At the end of the update, the volunteers in the room were applauded for our work, thanked for our efforts and all the money we raise to support the CFF. Three awards were handed out and guess what my friends?

Jeff and I were honored to accept an award on behalf of Team Olivia-Polaris, but first let me take a step back . . .

We've been doing the CF Climb for 7 years. I remember clear as day, after Olivia was born and I was told not to google CF, I did and thankfully I stumbled upon the CFF website. From there I searched to find out what it was that I could do to help Olivia and the next CFF event coming up at that time in Minnesota was the stair climb. I sat there and told myself, I can do this, I will do this. Jeff agreed to do it with me and we were blessed to have a few family members and friends join us and that very first year we raised an impressive $2500 and had a team of 11 climbers.

Team Olivia - 2010

We've come a very, very long way. Last Saturday as we climbed to the 50th floor of the IDS Center for the 7th consecutive year, we had a team of 58 climbers. With the Polaris Foundations matching gift our team will have raised right around $20,000 for the 2016 CF Climb! Again, Wow!

Now . . .  back to last nights award ceremony. 

Jeff and I were presented with an award of "golden shoes" for our work and dedication to the CFF and the fact that to date, we've raised over $100,000 for the CFF on behalf of Olivia! You read that right, $100,000!!! 

That right there, that is something to applaud. That right there is beyond amazing. That right there is a number I never imagined possible 7 years ago when we were just starting this CF journey. That right there, shows me that we have more than amazing family, friends, co-workers and an amazing employer with matching funds. That right there, means more to Jeff and I than anyone will ever know. I'm speechless. I'm humbled and I'm honored. Jeff and I were very honored to accept those golden shoes on behalf of all of you, our family, friends, co-workers and generous donors. 

Thank You to everyone who has joined our team over the past 7 years. Thank You to everyone who has generously donated to the CFF on behalf of Olivia over the past 7 years. This award, these golden shoes are for you - YOU DID THIS! 

A thank you seems inadequate for all that's been accomplished over these past 7 years by our team but I truly hope everyone knows how sincerely grateful we are. Jeff and I know how important the money we raise is to keeping up with the research and momentum that is the CFF. Olivia is taking part in a research study now, that requires a lot of out of her, a lot of missed school, many 9-10 hour days spent at clinic, many pokes and prods and needles but we do this because we can. We do this because we see a future. We do this so that someday a parent won't be sitting where Jeff and I were as our journey with CF began in the NICU at Children's. We do this so that someday, CF will be cured and I honestly and truly believe that day is coming. 

So with that, cheers to all of you who've helped us get to this point. Thank you from the bottom of our hearts.I have so much more to share regarding the 2016 CF Climb, our final numbers, photos, details about the "Rocky Mountain Edition", etc and I will share all of that, another day. Olivia and I will be tackling the proper hand-written thank you's this weekend and into next week for all of our 2016 CF Climb team and donors but I just had to post this update now as it was too exciting not to share. From the bottom of our hearts, thank you!

Thursday, February 11, 2016

CF Climb - 2016

The CF Climb is just a few days away! I'd like to thank everyone that has joined our team, donated to support our efforts, those whom have joined us virtually - adding to our fundraising and all those that will be climbing with us this Saturday! When I last looked, we have 55 registered climbers - amazing and by far the largest team for the Mpls. CF Climb this year!

Minneapolis CF Climb
Saturday, February 13, 2016
General Climb runs from 9 - noon

Team Olivia-Polaris will meet in the Crystal Court of the IDS Tower around 10:00 am.
We will snap a pre-climb group photo and then proceed our trek to the top as a team immediately 

Thanks to everyone for your support!