it's been a while... but I'm back!!

It's been quite some time since I've been active on the blog!  The second half of 2012 was so busy for us that I really didn't have much time to keep up with blogging or with the Kaelyn's Kure facebook page.  But I'm ready to start up with posting more again, sharing updates, and getting ready to kick off 2013's fundraising and awareness efforts for CF!

So here's a few updates:

• Kaelyn has been doing great!  It's hard to believe this year she will be 5 already... and starts kindergarten this fall... WOW!  :)  Her health has been really good and she had her annual CF review a month ago at the end of December.  The results came back looking great: 
  
• Protein, iron, blood sugars, vitamins A & C all were great :)
  Vitamin E was elevated
  And vitamin D was once again low :( So just a few small changes to her daily vitamin intake to help adjust D & E levels! 

•  I decided that as part of my fundraising and awareness support this year, that I wanted to participate in my first half marathon :)  I am not a big runner.  I'm active, but my endurance for running is very low.  So this will be a huge challenge for me and a major accomplishment to finish the race.  I'm not running to achieve a certain finishing time though, I'm running for a cure and for Kaelyn.  I really wanted to push myself through this challenge because I know that CF is a challenging disease for those who face it every day.  Part of being able to run for CF is raising money to support ongoing research for a cure... so to be able to raise more funds to help us get closer to that is another reason I'm running.  I decided to re-join my gym again, because the winter temps here in Pittsburgh are just too unpredictable.  With temps this week in the single digits and windchills below zero, I just couldn't face my hatred for the cold and run outside... but I knew I needed to get started with my running if I want to have a chance at meeting me goal of completing 13 miles (and I only have 3 months left to get at it).  Yesterday was my first day back in the gym and I'm following a half marathon schedule given to me by a friend.  Yesterday's distance to accomplish was 3 miles, and I completed it, but it was HARD!  Thinking about adding 10 miles to that over the next 14 weeks is intimidating, but I want to think positive that this can be done... and I have the most amazing motivation to help keep me focused, Kaelyn.  I will be posting updates of my progress as I go along for anyone who wants to follow me on this journey.

•  Kaelyn's Kure is registered again for Great Strides 2013 :)  We currently have 9 people already registered with us to walk on our team.  The walk is scheduled for Sunday, May 19th at South Park and it's never too early to register as a walker.  As always, registration for this walk is free!  If you can't walk with us this year, but would still like to support our team, you can donate to team Kaelyn's Kure through the following link: http://www.cff.org/Great_Strides/JulieWeber  Last year we were able to raise over $15,000 as a team for CF and we're hoping to raise that much again or even more :)  We have such an amazing team and so many people who support us and helps us out each year to be as successful as we are doing what we can for the CF Foundation.  Thank you all again for the love and support - it is truly heart-warming to our family.

Team Kaelyn's Kure 2012

 

 
 

success again!

I'm well overdue for some thank you's going out to some amazing people and businesses who helped to make out 2nd annual Cheers For A Cure fundraiser an even bigger success this year!  On Saturday, April 28th we put together our 2nd annual Cheers For A Cure which is the biggest fundraiser we personally host to raise money for Kaelyn's Kure and The Cystic Fibrosis Foundation.  This year's success surpassed last year's by $1,200, which brought our one night total to $3,900 raised for CF!!  I set the bar high this year, my goal was $5,000.... but hey, there's always next year and I hope to improve more and more each time this event comes around in the spring!  The turnout was simply AMAZING!  I'd say we had about 150-175 guests throughout the night and we couldn't be happier for all those who made it out to show their support for Kaelyn and our family.  WE ARE BLESSED TO KNOW YOU ALL!

While the event stresses me out at times and can be chaotic pulling it all together, it's well worth it in the end.  Even though I take the brunt of the stress, the event would not be possible without the help of some truly wonderful people.  I'd like to take the time to personally thank everyone again for their help and donations: 

Citywide Garage Door Co. – Kindle Reader Basket w/ Amazon gift card

Dennis King – Kindle Reader

The Bittner’s & Whalen’s – Kuerig Coffee Maker

The Weber Family – Blue Ray DVD Player

Snap-On Tools – Cordless Power Screwdriver

Snap-On Tools – Blue Point 8 Piece Pliers set

Weber’s – TaylorMade RocketBallz Tour Driver

Weber’s – Coach Purse

Studio Raw – Salon Basket w/ $150 cut & color

Jessica Clair – La Pomponnee Salon Basket w/ $100 GC

Ashlee Starr – Beauty Bar Basket w/ complimentary cut

Gina Beck-Cifelli – Salon & Spa On The Green Southpointe Beauty Basket w/ complimentary cut

The Seaman Family – Lottery Tickets Basket

The Rost Family – Beers of the World Basket

The Verscharen’s & Fite’s – Outdoors Basket
The King Family – Bakery Basket

The Burgos Family – Wine Lover’s Basket

The Hirt Family – Tastefully Simple Basket

Dana Sasuta – 31 Basket
Christine Nelson & Sue Shore – Bath & Body Basket

Heather Mann – Kid’s Summer Fun Basket

Erin Monohan – Sports Golf Basket

Joanie/Bright Horizons – Family Movie Basket

Cindy McMullen – Mr. Magic Basket

Pecosh Counseling & Consulting – Ice Cream Sundae Basket

Ed Planinsek – 2 wildlife prints

Clique Vodka - Clique Gift Basket 

Finally, we’d like to thank Aron Schutzeus for allowing us to host Cheers For A Cure at Milestone and for all his support with this event!

The night's success wouldn't have turned out the way it did without your help and support, so THANK YOU ALL!!  Also, a big thank you once again to everyone in attendance that night - we loved sharing the evening with you all to help raise money to cure Cystic Fibrosis!  Your support at these events is making a difference - the money we are raising is generating life-changing research and new drugs that are doing things we have all been waiting for in the CF community. 

As we are just days away from the 2012 Great Strides Walk, I am very touched by all the people who have made a contribution to team Kaelyn's Kure this year.  Our family looks forward to walking with you all again on Sunday!  Here's some quick reminders for Sunday morning:

1. If you are NOT registered online by Sunday, please come to the walk a little earlier so you can complete your registration.  I'd say to arrive by 9:30am.

2. If you're already registered, please arrive to the museum building no later than 10:00am.  Be sure to check-in at our table inside.

3. Remember, EVERYONE must be registered to walk - including children.

4. Don't forget to wear your purple Kaelyn's Kure team t-shirt!  We will bring all the new orders with us on Sunday.  If you haven't paid us yet, please do so on Sunday.

5. Our Team Picture will be at 10:30am on the track.  We'd like to have everyone on our team in the picture, so please try to make your way to the track around that time.

6. The walk will begin shortly after pictures and there will be a small lunch served afterwards.  Plenty of water and pop will also be supplied.

7. There is a Chinese Auction at the walk with lots of great prizes - if you're interested, please bring cash to buy tickets.  All money raised goes to CF.  There will also be a few children's baskets too.

See you all on Sunday!!  If you still need to register or would like to make a donation if you're unable to walk, please visit:  http://www.cff.org/Great_Strides/JulieWeber

love and support

This time of the year always has a special place in my heart... each spring is when the Great Strides walk rolls around, along with CF awareness month in May.  Even though this is only our 2nd year participating since Kaelyn's diagnosis at birth, it's really opened my eyes to a lot of wonderful things about the CF community.

If you follow along with Kaelyn's Kure on a regular basis, you probably notice the increase in posts around this time of the year...... and most of them are us reaching out again for your support - to walk with us, donate, and spread awareness.  Some may get tired of seeing the reminders, but this is the time of the year to put in my maximum effort so we can hopefully end CF one day.  This is Kaelyn's life that I'm working hard to make a difference in - not to mention the lives of all others with CF.  Every fact I write to spread awareness to those who may not know all we have learned, every time we speak at an event, every time we attend or host a fundraiser, and every year we walk as Kaelyn's Kure, I do it to make a difference....... no matter how big or small that difference may be.

To families like ours, what makes the biggest difference to us is the support we receive along the way.  Supporting Kaelyn's Kure extends in so many directions, some of which may have never crossed your mind.  I know for many, one of the first things that comes to mind when speaking in terms of support is making a donation.  In reality however, it might not always be possible.  So what else can you do to help?  When it comes to showing support there's plenty you can do, and most of these things are the most meaningful to families like ours......

• Walk with us.  It's a great way to be by our side on a day that's entirely dedicated to CF awareness.  Seeing all those faces who showed up to walk with us last year was simply amazing, especially the faces of some who I hadn't seen in quite some time.  Faces of those who I graduated high school/college with, faces of those who I've worked with, and the new faces of those who we just met after getting more involved with the CF community.  Walking is a great way to show your love and support!  
• Spread awareness.  This is one of the easiest ways to help, and to us, is the most heart-felt simply knowing how much people care.  Share our blog, our Facebook page, our CF documentary video, invite those who you know to the walk or to a fundraiser.  When we see family and friends sharing these things with others and spreading awareness with us, it really means a lot.  After all, "actions speak louder than words and to the families living with CF, it can some times be more helpful than dollars"!  :)    

Love and support mean the world to us...... And it's very touching to know just how much of that surrounds Kaelyn.

 
To walk with us, watch our CF documentary video, or make a small donation to our Great Strides team, please visit:   http://www.cff.org/Great_Strides/JulieWeber
The walk is just a little over a month away, so be sure to register online when you have a minute.  And if you walked last year, registration is simple because all your info will still be saved!

Sunday, May 20, 2012 - 10:00am at South Park, PA.  Hope to see you at the walk next month!!

"give a little love" - our first documentary

Last month Chad and I were asked if we'd be interested in sharing our story and filming a short documentary on CF to be used for awareness.  As Kaelyn's mom, I like to take advantage of each opportunity we have to raise awareness because it's so very important to us.

So many people in our lives are now aware of what CF is, but a lot of people don't see the other side of CF - which is what it takes to care for Kaelyn and keep her healthy.  It means a lot to us to be able to share our story with others......



If you'd like to support Kaelyn's Kure and the CF Foundation, please visit http://www.cff.org/Great_Strides/JulieWeber and click on "Click to Donate".  Remember, any amount you can donate helps to make a difference in someone's life.

Thank you to all the wonderful people in our lives who continue to support CF and our dream of finding a cure.  xoxoxo
Special thanks to Dan Burda for making this documentary - you're amazing!

save the date!

It's that time of year again when Kaelyn's Kure is in full swing getting ready for the Great Strides walk!  The walk this year will be on Sunday, May 20th at South Park.  Our team will be ready to take on the walk again as we walk for Kaelyn and Cystic Fibrosis.  Last year's walk, which was our very first Great Strides, was beyond successful!  Our team consisted of 85 walkers and we managed to raised almost $11,000 for the Cystic Fibrosis Foundation!  Those funds are what brings the science and research to the table for CF and adds years to many lives, which is so, so very important!  If you'd like to join our team for the walk, or donate in honor of Kaelyn, visit our Great Strides page:  http://www.cff.org/Great_Strides/JulieWeber

A big part of last year's success for our team was our fundraiser in April, Cheers For A Cure, which we will be hosting again next month!  It will take place on Saturday, April 28th and we will be holding the event at Milestone in Brentwood on Brownsville Road. 

We plan to once again have a Chinese auction and 50/50 raffle.  If anyone is interested in volunteering to provide any baskets, prizes, or gift cards for the auction, please let me know!  You can email us at kaelynskure@gmail.com or get in touch on Facebook.  Right now we are looking for any and all types of baskets - last year we had a garden basket, 2 wine baskets, a picnic basket, cooking basket, outdoors basket, and mixed drink basket.... along with several different prizes and gift cards.  We truly love the support of our friends, family and volunteers who help us to make this event such a success!

As the event gets closer and all our ideas start coming together, I will post more details.  :)
For now, please help us spread the word and don't forget to SaVe ThE DaTe!

Cheers For A Cure

Saturday, April 28, 2012

Milestone in Brentwood - Brownsville Road

Walk with Team Kaelyn's Kure
Great Strides for CF

Sunday, May 20, 2012

South Park @ 10:00am

Outstanding Results!

I know it's been long overdue for me to post about Team Kaelyn's Kure and the success we had at our first Great Strides walk, but things have been pretty busy over the past month since the walk!

Overall, the South Park walk location raised over $120,000 last month at our walk on May 22nd!  Simply amazing!  What's even more amazing is that Kaelyn's Kure helped to contribute almost $10,000 to that grand total!  It looks like our team total came in at $9,933 - which is so awesome, especially since the average most new team's raise is approximately $1,500 their first year walking with Great Strides.

I feel so blessed to have met so many wonderful people who have reached out to support cystic fibrosis and Kaelyn.  I know as she gets older and realizes what CF is all about, along with the support she's had growing up, she will feel just as blessed that you all have been there for her since the day we found out her diagnosis.  To only be 3 years old and have such a strong support system will mean the world to her in the future.

The best part of the walk last month was seeing all the faces who showed up in their purple Kaelyn's Kure t-shirts to walk with us.  Our team was 85 walkers strong that day, and while most faces were familiar, we also had some new faces join our team - we couldn't be happier in meeting you and having your support!  Another amazing part of the day was seeing some friends whom we hadn't seen in a few years!  All in all, it was just a fantastic day!

TEAM KAELYN'S KURE 2011

To view even more pictures from the 2011 Great Strides walk, follow the link below and if you haven't already viewed and "liked" Kaelyn's page, please do!  We use it to keep everyone up to date on upcoming fundraisers and to help in continuing to spread awareness about cystic fibrosis!

More pictures from Team Kaelyn's Kure - Great Strides 2011:

https://www.facebook.com/media/set/?set=a.189689761078792.50532.174010899313345

Thanks again to everyone who, in some way or other, supported CF this year!  And remember, you can continue to support the foundation at any time, there's always fun things going on all throughout the year.

  

Keep in mind that your help has made you personally responsible for helping improve someone's life!  =)

Great Strides Walk Information

Family and Friends,

For everyone walking with Kaelyn's Kure this Sunday, you must be registered.  This includes ALL AGES, so kids too regardless of how young!  The foundation would like everyone to try to register online to save time on walk day.  You must sign up online by NOON today - otherwise you will have to register again on Sunday in person.  Follow the link below to register.  Click on "Join My Team" once you arrive on the page.

http://www.cff.org/Great_Strides/JulieWeber

Everyone is to meet in South Park inside the building with the big clock on it by the track and baseball fields.  If you still have not registered yourself or your kids, you can do so then.  If you pre-registered online, YOU WILL STILL NEED TO CHECK-IN at our team's table.  All tables will be labeled with team names - look for Patty and Marie at our table.  They will be taking new registration forms, donations, and checking you in. 

If you raised $100 under your own name for the walk, you will be given a ticket upon check-in for a free Great Strides t-shirt complimentary of CFF!  Patty and Marie will have everyone's info at the table and how much you've raised/donated.  Kaelyn's Kure team t-shirts will be available through myself or Chad if you have not picked yours up from us prior to meeting on Sunday.  

Please make sure you arrive at check-in by 10:00am.  After checking in, feel free to check out the gift baskets or take part in the 50/50 raffle.  These prizes will be raffled off before the walk begins at 11:00am.  Team pictures will be taken for each team participating in the walk, so be sure to stick around so we can find you when the time comes.

Our team will be honored for our awesome effort with a big customized banner at the walk!  All banners displayed at the walk represent the individual teams who raised over $5,000 as of April 30th.  Although all our funds still haven't posted to our team online yet, I believe that our team is closing in on $8,500 currently!  We've done such a wonderful job as a team for our first year being involved with the walk!  The efforts that everyone has put in to support Kaelyn's Kure and CF have truly touched our hearts!    Since CF research is not government funded, your donations matter greatly!  Without your help, Kaelyn wouldn't have the treatments she needs to stay healthy!

Kaelyn's Kure was also chosen by the CF organization to cut the ribbon before the walk begins!  This honor was decided because of our outstanding efforts during our first year with Great Strides!  Chad, Kaelyn, and I will cut the ribbon, and then Kaelyn's Kure will lead the walk on Sunday!  :-)

Don't forget, after the walk food will be provided too!  We will have water at our team table as well as pop and other drinks.  We're looking forward to the walk, and also seeing some old friends we haven't seen for a while!  Thank you in advance to everyone who's planning to come out this Sunday!  If you have any other questions, please get a hold of us.

PS - A friendly reminder about smoking: 

We all know smoking is bad for you, but for someone with CF, it's a fast track to irreversable lung damage, and this includes second hand smoke!  We have to be careful where we take Kaelyn, keeping in mind if there will be smokers there or not.  The key to keeping Kaelyn healthy and alive for as long as possible is by protecting her growing lungs.  The same goes for all the other CF'ers who will be at the walk.  Please refrain from smoking at this walk or around the other teams who will be participating.  It's so important to all of us and to the lungs of the CF individuals!

Watch our video!

Make an on-line slideshow at www.OneTrueMedia.com

Truly Touched...

The generosity of others towards CF throughout the past several weeks has been simply AMAZING!  We are blown away by the huge support system we have from family and friends - AND, what's as equally touching and amazing is the kindness of complete strangers who have been reaching out to Kaelyn's Kure and CF.

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure, and the foundation funds more CF research than any other organization.  Nearly every CF drug available today was made possible because of foundation support from people like you!

Right now, SO many exciting things are happening in the CF community and I encourage you to take a look at the 2 articles below.  By supporting CF, you're helping to make these types of research opportunities possible and giving hope to the 30,000 kids and young adults fighting this horrible disease!

http://www.cbs59.com/story.cfm?func=viewstory&storyid=96698

http://news.yahoo.com/s/livescience/20110512/sc_livescience/teendiscoverspromisingcysticfibrosistreatment 

Kaelyn's Kure has met and EXCEEDED our goal in our very 1st year of having a Great Strides team!!  We set our 2011 goal at $5,000 and today we just surpassed that goal - currently coming in at $5,055 in online donations alone!!  AMAZING!  AND this total doesn't yet include the Jose & Tony's fundraiser funds yet.  (It takes a lengthy amount of time, especially in the month of May for funds to process and post online.)  But, with that being said, we are currently looking at a team total of close to $8,000 and we aren't done yet!!!  Wonderful job so far everyone - can't wait to hear the official total at the walk!  We can't thank you enough for being on our team!  Whether you're walking with us next Sunday or you're one of Kaelyn's Angel Walkers (you can't make it to the walk, but will be there with us in spirit), our team wouldn't be this huge and this successful without each and every one of you! 

Our 1st year's success with Great Strides has landed us a surprise honor on the day of the walk, but we'll save the surprise for next week!  For those who are unable to make it, no worries, we'll fill you in and post pictures from the day!  =)

It's still not too late to sign up as a Walker or Angel Walker - there's still a week left until the walk and Kaelyn would LOVE to have you on her team!  Click on the Great Strides image below to join the team or to check out our team's total raised to date!  See you all next weekend - fingers crossed for NICE weather, I know it's hard to come by in the city!  (Kaelyn's Kure t-shirts will be in next week if you ordered one)

xoxoxoxo

 

Kaelyn's Kure Walk T-Shirts

The Great Strides Walk is quickly approaching and we couldn't be more excited to participate in our first walk!  Chad and I are taking orders for our team's customized t-shirt which will feature our team name in white font on a purple shirt.  We choose purple since it's the CF awareness color!  :) 

Please let me know ASAP if you'd be interested in a shirt (and a size) for the walk on Sunday, May 22nd!  If you are unable to make the walk, and would still be interested in purchasing a shirt in honor of Kaelyn, please let me know!   Shirts will be approx. $5.00-$6.00 each.  We are also checking on the availability of shirts in kids sizes as well for anyone who might interested! 

We hope to get as many ppl as possible on the team to wear our customized team shirt in honor of Kaelyn!  I will be posting more walk information over the next 2 weeks, so check back for updates!  We look forward to seeing everyone at the walk!  Thank you all for your efforts leading up to this day!  :)  

Love, 

The Weber's

FIVE

The Power of a Dollar...

In the search for a cure, EVERY dollar counts!  I know a lot of people think to themselves, "What's a few bucks going to do?".  Each and every dollar raised towards finding a cure for CF helps add tomorrows to all those affected by CF and it provides hope for all the younger generations who are diagnosed early on in life.  It doesn't take a large donation to make a difference...

"FIVE"

This year's Great Strides walk is in the month of May.  May, being the 5th month of the year, is a special month for us - not just because it's when the CF walk will take place (5/22/2011) but also because it was the month Kaelyn was born (5/31/2008).

A $5.00 donation to the Cystic Fibrosis Foundation CAN make a difference in the lives of the 30,000 children and adults living with CF in the U.S.  

I'm looking for 55 people to donate $5.00 by 5/5/11 to our Great Strides team, "Kaelyn's Kure".  Your donation will go directly to the Cystic Fibrosis Foundation to help provide a brighter future for all those affected by CF and to hopefully one day find the cure we've all been waiting for.

If you'd like to help us reach our goal of 55 people who make a $5.00 by 5/5, you can do so by clicking here which will take you our Great Strides donation page.  Simple click on "Click to Donate" at the top of the page to make a safe and secure donation.  

If you would like to further help us accomplish this goal, feel free to share this blog post by linking or reposting it to your Facebook, Twitter, etc.  By helping, you are doing a wonderful thing which we are sincerely grateful!  

Thank you for helping to "add tomorrows"!!  I will keep everyone updated as to the status of our goal!

Great Strides on You Tube

Be sure to check out Great Strides on You Tube from the Cystic Fibrosis Foundation's page.

http://www.youtube.com/CysticFibrosisUsa

It's awesome how this walk brings everyone together for such a wonderful cause!  

Great Strides is one of the largest national fundraising events for Cystic Fibrosis every year... just another way to help CF = Cure Found!  We are very excited to have a team this year for Kaelyn and look forward to the day of the walk!  :-)

Great Strides 2011 - Walk to Cure Cystic Fibrosis

This year, we have created a Great Strides Team in Kaelyn's name, Kaelyn's Kure.  Great Strides in the largest, most successful fundraising event of the year to support the Cystic Fibrosis Foundation's mission to better the lives of those affected by CF and to eventually find a cure.

Every dollar that's raised is very important in this mission since the foundation relies on the contributions made by families, friends, and businesses who want to see this devastating disease defeated one day, and see more and more lives saved.

This is our first year with Great Strides and we need all the help we can get in our inaugural season.  If you would like to walk with us in honor of Kaelyn, CLICK HERE, then click "Join this Team" on our donation page.  If you are unable, or do not wish to participate in the walk, any amount you can donate to Kaelyn's Kure is greatly appreciated!

Nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, car and education.  Any amount you can donate is appreciate, and remember, EVERY DOLLAR MAKES A DIFFERENCE!

Thank you from the bottom of our hearts,

Julie and Chad