Kaelyn's Kure: May 2012

Thursday, May 17, 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:

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

Tuesday, May 8, 2012

the light at the end of the tunnel...... is getting brighter!

My eyes filled with tears of joy this morning as an overwhelming amount of hope kind of took over. Over the past (almost) 4 years since we've discovered Kaelyn's diagnosis with cystic fibrosis, I've felt a good mix of emotions. I'd say sadness and anger initially described my feelings towards her CF. There were plenty of times when I just didn't understand, why us?

We're all dealt different hands in life. Some times our hand seems unfair, and I know that's how I've felt about mine on different occasions. Although, when it comes to the one card we were dealt with Kaelyn's CF diagnosis, I feel like I finally understand why it was dealt to us. While CF isn't something that I would wish upon my worst enemy and it's something no one should have to face... I feel like CF is a unique blessing in disguise. In my eyes, our family was dealt this card in our hand of life because we are strong enough to do something about CF - to keep on fighting for a cure and to make a difference in Kaelyn's life. When I see the support we get at the walk or at a fundraiser we put together, or the way our family and friends reach out without hesitation to do whatever they can to support our hope and dream of a cure one day - how can I not feel beyond blessed? Or when we attend various CF events throughout the year which are filled with unknown faces... people who aren't directly affected by CF but are still fighting for a cure with us out of the goodness of their hearts - it some times leaves me speechless, but once again I leave each and every one of those events feeling very blessed for my daughter.

In less than 4 years, I sit here with another change in emotion... an even stronger sense of hope. As a parent, I've always tried to have hope for Kaelyn's future knowing CF is a progressive, terminal disease. If it weren't for hope, what would I have?? I'm not going to let myself sit and sulk, get depressed and feel like there's no fighting chance for my daughter. At times it's hard, especially for me. I can let negativity get the best of me at times, and not just when it comes to CF. However, in less than 4 years, the research that has been happening in the CF community is simply amazing - way beyond what I'd expect to hear at this point! The title of an article I read this morning was: "Vertex's Cystic Fibrosis Therapy Is Called 'Game Changing'". How can I not feel butterflies in my stomach reading that headline?!? And if you've become a part of the Kaelyn's Kure family or you've learned what exactly CF is, it should hopefully bring a smile to your face as well! I've talked about Vertex Pharmaceuticals before when I announced back in January that the FDA had finally approved the very first drug to target the root cause of cystic fibrosis. Incredible news, but it could only help 4% of the CF population with a certain mutation.

Remember that cystic fibrosis has over 1600 different mutations that one can inherit from their parents (if their parents are carriers). The most common mutation is known as Delta F508. About 90% of those with CF have at least ONE copy of this mutation - Kaelyn has one copy of Delta F508 (her other is P5L). The news I read yesterday and this morning is about the 2nd drug that Vertex is working on right now that's currently in Phase 2 of clinical trials. This 2nd drug is being tested on those who have either one or two copies of the Delta F508 mutation and the results have once again been incredible! Breathing ability significantly improved, lung function increased... all because Vertex has been able to create drugs that are MAKING SALT TRANSFER HAPPEN in the cells (remember, CF mutations alter or stop salt transfer which causes the thick mucus that clogs airways and breeds infections). Because these drugs are correcting the salt transfer, the symptoms of cystic fibrosis are being halted!! THIS IS.... HAPPENING!! It's not a cure yet, it's not finalized, and there's still a lot of work to be done - but if that doesn't lift your spirit of hope then I'm not sure what kind of news will!

To read the latest CF news in more detail: http://www.nytimes.com/2012/05/08/business/vertexs-cystic-fibrosis-therapy-is-called-game-changing.html?_r=1&partner=yahoofinance

Today, nearly half of the cystic fibrosis population in the US are adults. This is due to:

Better antibiotics and airway clearance treatments. Right now, 40% of the cystic fibrosis population in the US are adults. The current median age of survival in the US is 36.5 years. CF used to be a disease of childhood, as patients with it lived only a few months in the early 1900's. By the 1950's, they were living long enough to go to elementary school and by the 1980's, the average lifespan was 19. Huge leaps in care and antibiotics have led to this improvement. May it continue!

True or False: I don't have to worry about having a child with cystic fibrosis, as no one in my family has it?

False. A person with cystic fibrosis has inherited the defective gene from both their father and their mother, for two copies. If you have inherited one copy of the defective gene, you are a carrier. 1 in 31 Caucasian Americans are estimated to be carriers. It also affects other races to a lesser extent. For more information on this disease, see www.cff.org. And please, help us fight CF!

We were completely shocked when we learned that Kaelyn had been diagnosed with CF just 13 days after birth. Just as the question states, we had no family history of CF on either side of our families. We have a 1 and 4 chance of having another child with CF, there is no guarantee another child of ours will have the same diagnosis.