Great Strides season is upon us! This year, the foundation has condensed several of it's walk sites in IL, so it took me a bit to decide which one our team should attend (the two we normally do are now gone). This year we're going to try to help Champaign's walk grow with our large team.
This year is also a special year for the Cystic Fibrosis Foundation. This is the 30th year of Great Strides! It also happens that I'll be turning 30 years old this summer! When I was born, in 1988, I don't think anyone expected me to live this long, let alone be thriving!
Since this year marks 30 years of living, thriving and beating CF, I'd love for this to be our biggest Great Strides year yet!
*Most number of people registered
*Biggest turn out in Champaign
*Largest amount raised for CF -- our team goal is $5,000 (or more)
To reach these goals this year, I need YOUR help. If you'd like to walk with us in Champaign this year, please make sure that your register online for free: http://fightcf.cff.org/goto/colleen30
Whether you can join us or not, to help raise awareness of CF and it's need for donations, feel free to share the link on your social media with friends, family, co-workers, etc. The more we make people AWARE of CF, the more likely we are to collect DONATIONS. And as we know, DONATIONS go to RESEARCH for MEDICATIONS and hopefully one day, A CURE!
Did I mention it's Great Strides season?! This spring was filled with three Great Strides events for me and it was so awesome!!
DeKalb
Our first event was in DeKalb in April. This one is very special to me because I helped create this walk when we lived there five years ago. It also takes place at the same park where Tim and I got married, so it has lots of sentimental value to me. I loved having Anna there this year and am excited to continuously attend as the years go by and as our family grows and changes. Its fun visiting the town where it all started.
We typically have a smaller team at this event - a few of our friends, my family and Tim's aunt & uncle who live nearby. Even though our team was small, we still raised $450!
Parsons
My second event was actually held at my school. I was lucky enough to have the opportunity to speak to all classrooms about what CF is and how I keep myself healthy on a daily basis.
We did two fundraisers as a school and finished with our own Great Strides Walk on the path around our playground. Each class collected money, but then we also did a school-wide change collection that was much more popular. We had a "Cutest Baby Contest" where I displayed 26 different baby pictures that belonged to different staff members throughout the building. The students put change (some put cash) in the jug of the baby they thought was the cutest. It was so fun and the kids loved it!
The combined total from classroom donations and the Cutest Baby Contest was $597.63! My students brought in the most money to our class so we were able to lead the school in our Great Strides walk. As an entire school, we walked one mile outside. The local newspaper was there to report on our event, and there was also a former student (now in her early 40s) who has CF and has had a double lung transplant who walked with us. (Extra pictures from the paper)
It was an amazing event to bring awareness to the kids about CF and I'm excited to see it hopefully grow into the community over the years.
Bloomington
Our final Great Strides event was in Bloomington which is now our team's biggest location. I even had a few Parsons people come out to support me! Last minute, I was asked to speak before the walk, which I always enjoy doing because I hope to spread some positives about CF and how it is possible to live a 'normal' life despite having a disease. This year, I brought Anna up with me during my speech.
We enjoyed a nice walk with friends and family, then hung out at the park for a little while before leaving to celebrate our nephew's second birthday.
Our team raised a total of $1,695 at this sight!!
Which brings Parsons Owls and Colleen's Friends and Family grand total to:
$2,907.63!!!!
Thank you so much to everyone who shared information about CF, donated and walked with us this year! I am so lucky to have such amazing people in my life. :-)
Click on the picture above to head to my team's Great Strides page
Colleen's Friends & Family's next Great Strides walk is just around the corner!! We had our first one on April 12th, in DeKalb, and our team raised a total of $1,455! Our next one is in Bloomington on Saturday, May 10th. I'd love for our team to raise a combined total of $5,000 between the two walk sites. So far for the Bloomington one, our team has nine people registered who have raised $645. That puts our team total at $2,100 so far! I'd love for us to reach a grand total of $5,000 this year - only $2,900 left!! Don't forget that donations & fundraising don't close after we've walked in Great Strides, it's open all year. Feel free to share this with your friends & family to help raise awareness & funds for the Cystic Fibrosis Foundation to help me live a long and healthy life for my husband and daughter!
Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for, no matter how big or small, then I'll post them at the end of the week. Go here for the first week, and here for the second week.
9) I'm thankful for understanding friends. Today, we spent the day with our friend, Tony because he lives about five minutes from where we're doing our CLIMB tomorrow. This evening, another one of our friends, Chris, came up to hang out with us, too. The guys decided they wanted to go out to an arcade bar, and I decided I was going to call it a night - and I didn't get any crap from them this time! They understood that I wasn't feeling well and wanted to catch up on my sleep, especially before a big day and I just really appreciate that! I also love that Tony was asking me all about how I've been doing and everything I've been taking, like my Kalydeco. He works as an athletic trainer at a high school and is very health-conscious (he's completed TWO Iron Man events!). We compared digestive enzymes (mine are way more powerful!) and he asked lots of questions about how K has been helping me. I love educating others more about my CF, and I appreciate that he cares enough to ask. And thank you, Chris, for letting me sleep! :)
10) "I'm alive and well." Today, Tim and I completed the CF CLIMB! And although I'm in the middle of a nasty cold/sickness/infection - whatever it is - I was reminded that I'm still doing well. I'm still well enough to complete a physical challenge such as climbing 58 flights of stairs. I'm very thankful to be as healthy as I am today. Today was also a huge reminder for how much exercise is good for my health. I'm really hoping I can get back into an exercising routine to make myself even healthier. :)
I heard this song on the radio a week or so ago and I can't get enough of it! Here's my favorite part:
"But not me, I'm alive
And today you know that's good enough for me
Breathin' in and out's a blessin' can't you see
Today's the first day of the rest of my life
And I'm alive, and well.
I'm alive, and well."
~I'm Alive by Kenny Chesney & Dave Matthews~
11) Today I'm thankful for motivation, especially from my CF friends! After posting about our CLIMB, I got a lot of awesome feedback, and it made me want to do more. I miss the feeling of setting a fitness goal and the best part - the feeling I get after I accomplish it. So today I set a new goal and that's to run another 5K. But not just any 5K - this one is the Rock CF River (half marathon or) 5K in Michigan, put on by a great motivator, and fellow CFer, named Emily Schaller. Today I learned that several CFers that I've 'met' online from around the country are all coming out to either run the Half or 5K, and I'd love to join them. So my motivation for this winter is to get my butt back in shape for this race at the end of March! :-)
12) I'm thankful for the Cystic Fibrosis Foundation and anyone and everyone who has ever donated to them! Without your monetary support, I would not have many of the medications that I take today. Nearly 90 cents of every dollar donated to the CFF goes directly to CF research and education. That research (which is extremely expensive) is for all the new medications that go to years of clinical trials before becoming available to patients. Read this article to learn much more about the CFF and how far they've come - it's a great read! THANK YOU, THANK YOU, THANK YOU!!!! You're helping to keep the CF community alive! :-)
13) I'm thankful for a HUSKIE victory tonight!!! GO NIU!!
14) I'm thankful for the roof over my head! I love our new house and we're very lucky to be able to own our own home. It's an awesome feeling to finally not be renting anymore, and to be able to do whatever we want to our house.
15) Tonight, I'm thankful for YOU, that's right, you, reading this blog right now! Without you (the readers), there'd be absolutely no point in blogging. I love knowing that people care to read what I have to say, whether it's about my CF, teaching, or just life in general. I hope that with this blog, someone somewhere is connecting with what I have to say and not feeling like they're the only one out there. I hope that someone somewhere is learning about CF through this blog. I hope that someone has benefited/gotten some advice from any of my posts. Just like the CF Living videos, I do this blog not only to raise awareness about what CF is and how I deal with it, but also to hopefully be that resource that someone needs. I was there once and I was looking for something like this - to tell me I'm not going through this crazy thing called cystic fibrosis alone - and I hope that I can be that for someone else. :)
16) Today, I'm thankful for weekends. Tim and I are enjoying a nice relaxing day filled with errands this morning, a late lunch, and a lovely nap on the couch! It's really nice not having anything planned this weekend, finally, and to be able to spend some relaxing, stress-free time with my husband. :-)
Call us crazy, but Tim and I just signed up (and paid) to climb 58 flights of stairs on a Sunday morning!
Why, you might ask?? Well to support the Cystic Fibrosis Foundation, of course!!! I received an email from the Foundation the other day informing me about this event and it piqued my interest. It's downtown Chicago, so I thought I'd get more of my family to sign up (not one yet....they must be too scared ;) ) and I've been exploring lots of Great Strides events this year, what's one more fundraiser for the year? Plus, they were having a promotion where it was only $10 to sign up instead of the typical $45 - can't pass up a deal like that! It's going to be a physical challenge, but I won't let me CF stop me on this one.
And with the new CF regulations & guidelines, more than one CF patient can attend indoor events sponsored by the CF Foundation at their own risk. Here's the disclosure from the event's website:
B. CEPACIA AND INFECTION CONTROL POLICYBecause of risks to people with cystic fibrosis (CF), only one person with CF may be invited. Also,individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex shall not attend any Foundation events/meetings. These requirements are because CF germs can be passed between individuals who have CF. Some germs in a person with CF can cause serious respiratory illness and, in some patients, may lead to death. CF germs are not a risk for otherwise healthy individuals.
Despite this policy, individuals with CF might choose to attend events or meetings without informing the CF Foundation or without the Foundation's knowledge. If so, they do so at their own risk. The Foundation accepts no responsibility for any risk to health involved in attendance, or in any social contact between persons with CF. For more information, please visit www.cff.org.
I'm glad that they're not enforcing the strict regulations of only one CFer attending an indoor event. I feel like a lot of people in the CF community were really turned off by this, and I think it's fair that we're able to make our own decisions on things like this. I understand they're doing it to keep us safe, and also to cover themselves, but I think that CF adults should be responsible and mature enough to make their own decisions. With that said, I am aware that at least one other CF patient will be there, so I will wear my pin proudly to identify myself and be sure to keep my distance.
Finally, my goal for this event is to raise at least $200. If you'd like to donate to my CF Climb, please let me know. My page hasn't been set up yet on the CFF website, but as soon as it is, I'll post it on here. Right now, I'm just collecting any cash or check (made out to the Cystic Fibrosis Foundation) donations to submit on the morning of the Climb.....which is only three weeks away! I better get these legs into shape!!!!!
Today I haven't felt much of a difference than I usually feel from day to day. I have noticed that I'm still coughing, but it's not all day long (and it hasn't been since I've started K). The coughing comes in spurts throughout the day (I've noticed it the most a couple hours after I do my morning treatment) and when it comes, it's lots of thick, sticky and green gobs coming out. There was only one gob that came out today that had tiny specks of red, so I'm glad that's getting better. I'll go back to doing my full HTS neb tomorrow with my morning treatment.
Today's evening dose posed a new problem thing to keep in the back of my mind all the time because I've never had to take a regular evening medication (aside from Cipro). Tim and I hopped in the car around 6:15 to head to Menards and as we turned down the first block after our house, I said to Tim, "Oh no, we better be home by 7:00 because I have to take my Kalydeco then." Well, we both knew that wasn't going to happen because Menards is about 15 minutes away and that would leave us 20 minutes to shop - no way! So I decided to just go back around the block to head home and grab it. On the way back to our house I asked Tim to check my purse to see if I already had a protein bar in there, or if I should grab that out of the house, too. He found one in my purse and told me it was 12 grams of fat - perfect! When we got back home, I ran in and grabbed the bottle of Kalydeco and back off to Mendards we went. I felt a little weird eating a protein bar while walking through the store, but whatever. I think I'm going to have to keep my purse well-stocked with protein bars and/or peanuts. And also a cyster recommended keeping two extra pills in my purse for occasions just like this - great idea!
**And finally, I wanted to share a link to this great article from Discover magazine that the Cystic Fibrosis Foundation sent me the link to - it's an awesome, informative read! It discusses how/when scientists discovered the CFTR gene in the 1980s and how cystic fibrosis research has progressed since then. It's amazing to learn how much they've been working on creating medications like Kalydeco and how it's all been funded throughout the years. It makes me appreciate the jobs of researches & scientists, and everyone's fundraising efforts even more!!!
*Oh yeah, and I forgot to add that I've had a slight headache today, off and on. I've also been having some stomach pains and bloating today - that could be due to the amount of not-the-healthiest food I've been eating yesterday and today, so we'll see how that goes tomorrow.
I would not be where I am today without the Cystic Fibrosis Foundation. Since CF is not a federally funded disease, all research is completed off of the money received from donations. The CFF funds most research that is being done to help cure this disease. On their website, you can follow new drugs as they make their way through the pipeline, which for me, is very encouraging to actually see the progress being made! So many of the drugs that are "To Patients" are ones that I am currently on that are helping to keep me healthy so that I am able to live a normal life. Thank you to anyone who's ever donated to the CFF and thank you to those who are working at the CFF and/or doing the research to help keep me alive.
Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life or anywhere around the world.
I can't believe I didn't post this when I first heard about it! Another wonderful advancement in CF treatment! It's a powder inhaled form of the antibiotic TOBI (which I nebulize every other month) -- I might have to bring this up with my CF doctor at my next clinic visit.
Tim and I took part in something this weekend that's very meaningful to me and I cannot wait to share it with you. It'll be shared this summer.
One of my students called me "the funniest teacher" today! It made me smile. :-)
I know I've been sharing this one a lot, but I'm very excited. My first Great Strides event of the year is on Saturday!
I received an email today from the Cystic Fibrosis Foundation informing me on the new infection control regulations between CFers. (My thoughts about it are below)
CF Foundation Updates Infection Prevention and Control Policy for All Foundation Events and Meetings
March 14, 2013
The Cystic Fibrosis Foundation recently updated its Infection Prevention and Control Policy for all Foundation events, meetings and offices to protect the health of people with cystic fibrosis.
The Foundation took this step based on increasing medical evidence of a greater risk that people with CF could spread destructive germs to others with CF, which may lead to severe or worsening lung disease. The new policy reflects the advice of leading CF medical experts and published medical research.
The key elements of the Foundation’s policy are:
Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
B. cepacia: Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia)complex attend any Foundation events, meetings or offices.
“We understand that these changes may be difficult for many in our community,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “However, we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”
The Foundation is expanding its use of teleconferencing and live videocasts to help make it possible for people with CF to participate in indoor Foundation events and meetings and is exploring other new technologies to engage people with CF in all of its activities.
I'm not quite sure how I feel about this. On one hand, I understand. It's to keep us healthy and from spreading our germs/bacteria to other CFers...but at what point to we have to put ourselves in a bubble? What about when I go to my CF clinic appointments, how are they going to seclude us in the waiting room? And I've even seen that at some Great Strides events (even though they're outdoors) CFers have had to wear a lei to identify themselves as having CF. Are all CF fundraising events going to be like this now? What about the black tie events and indoor things throughout the year where several CF patients were able to speak and tell about their experiences? It's tricky when we're trying to live as normal as possible, but yet we can't because we can't be around each other and everywhere we go we have to identify as a CFer. I'm not just a CF patient. I'm a daughter, sister, wife, aunt, teacher, and friend, too.
All I have to say is thank goodness for social media! I'm very thankful to have things like Facebook, CysticLife, CFLiving.com, blogs, etc to connect with other CFers. When you're going through something, and you feel like no one else understands, what do you want to do? You want to talk to someone who's going through the same thing as you; you don't want to feel like you're completely alone in all of this and that's what Facebook, CysticLife, CFLiving, blogging, and forums have been able to do for me and many, many other cysters, fibros and parents of CFers. Although this is discouraging, we can't let it define us! We have to keep our relationships strong exactly how we've been doing it. It's so important now to spread the word about these amazing websites and forums for CFers to connect.
Anyone want to buy me a webcam so I can keep in touch (and see) my cysters & fibros since I'm not allowed to see them unless we're yelling, outdoors, six feet away?! ;-)
Day 22 - A letter to someone whohas hurt ORmade you happy recently
To: Every one of my blog readers, every person who's ever donated to the Cystic Fibrosis Foundation, all of my family, friends and co-workers:
Thank you from the bottom of my heart, for all of your love, support, and encouragement! Without each and everyone of you in my life, I'd be a different person and I wouldn't be where I am today. To my blog readers: thanks for all of the comments/encouragement throughout the past year of my blog - it definitely keeps me going to know there are people out there reading (and enjoying) my posts. To anyone who's ever donated to the CFF - you are making my life wonderful! Thanks to all of your donations, I now have Kalydeco as a treatment option for myself (I'll go more into detail about that in another post)! To my family, friends and co-workers: Thank you for listening to me when I complain about my CF, supporting me in my recently goal to be able to start exercising and run a 5K (I think I found one in the summer I want to run! - More about that later, too). Thank you for the continuous encouragement to do my treatments and keep myself healthy, and giving me a reason to live!
Chances are you've already heard/read about the wonderful thing I'm going to post about if you're on CysticLife or you're my Facebook friend, but that's okay! It's too spectacular to not read it again!
This is how I feel right now!!
The FDA approved Kalydeco, the new drug that targets the underlying cause of CF in patients with the G551D mutation (ME!) - about 4% of the CF population!!!!! I'm currently 'too healthy', according to my CF doctor, to receive the drug right now, but that is a-okay with me. :-)
It's such an amazing feeling to know that all of the clinical trials/studies have definitely paid off! But it is SO important to keep spreading awareness and raising money so that the other 96% of CF patients can see their new medication come through the pipeline and get FDA approval, too. There are several clinical trials going on right now for a combination drug for those with CF with the most common mutation, Delta F508.
How appropriate! Instead of Live, Laugh, Love it's Live, Learn, Love!
Well, I'm finally back to work as of Tuesday and it's been great being back. The kids don't start until next Tuesday, the 6th, so the past few days have just been with the staff getting things together. I am very happy to say that I will be working in Kindergarten again this year, half in the resource program and half in the special education program. This is kind of something new for me, so I'm definitely looking forward to it. I am going to be working with some wonderful people (staff) so I'm very excited about that, too. I've attended several workshops/seminars over the past few days that have gotten my 'educator brain' going again and it feels so great, I love it! I'm just looking forward to the kids starting and getting into the full swing of things again. Oh, and I'll definitely be keeping track of some awesome 'kinder quotes' again this year and posting them on here for your entertainment! :-)
As far as my clinical trial debate goes (see previous post), I finally emailed back Spring (the person in charge of the study) today. After talking to several people about my dilemma and getting lots of advice from people, I've decided that I really want to participate in the study, but I really don't want to take eight days off of work. It's not good for the kids, for the classroom teacher, or for me if I'm trying to get a job working in that school district. Someone suggested seeing if I could put off the study until next summer so that I wouldn't have to take any days off work - genius! So when I emailed Spring today, I asked if we could start the study in spring (haha), preferably around May. This way I'm not waiting an extra month til June when school is officially out, but by that time of the school year everyone's usually a little burnt out, so a day or two off before the end of the year isn't always a bad thing. I'm hoping that it's not too long of a wait to start because like I said, I really want to help out the CF community by doing this trial. I will update on here as soon as I hear something from Spring, so keep your fingers crossed that they are awesome enough to wait for me!
Finally, I forgot to mention this last week when I posted about my recent doctor's appointment. I asked my doctor about my gene mutations because I wanted to make sure I had the correct information; turns out I was thinking I had one mutation when I had a completely different one. So you're thinking, so what? Well, it actually makes a huge difference!
To give a quick little background, to have CF you have to get a mutated CFTR gene from each parent (basically) to have CF. Some of those mutated CFTR genes have been identified and they're starting to do research to see if your gene mutation means that maybe you'll have a milder form of CF, or a more severe form, or more lung issues, or more digestive issues, etc.
I found out last week that I have one of the less common mutations in the CF world when I was thinking that I had the most common one. So this makes a difference because of this post: One Step Closer! They are doing clinical trials for a drug called VX-770, but it is only for patients with the G551D mutation--which I have!!! I, for who knows what reason, was under the impression that I had a completely different mutation and that this drug wasn't for me at all....turns out I was completely wrong. I learned from the doctor last week that I was tested when I was about 3 for my two mutations (one from each parent) and they could only identify one - G551D. Then, when I transferred to the adult clinic when I was 18, my doctor tested me again, because they had made so much progress with CF reseatch, to see if they could identify my other mutation but they still couldn't. I was given this information after my doctor got the results five years ago, but I must not have written it down or something but I'm so glad I asked again. Of course, I didn't realize all of this until I got home from the doctors appointment, so I don't know what my doctor knows about the drug, but I'll definitely be asking the next time I go (in December)--kind of exciting for me to find all of this out. So, I'll definitely be keeping a closer eye on the progress of the VX-770 since I know that it's something that could work for me if/when it becomes available to CF patients!
Great news for CFers, and all of those who have donated to CFF, today!!!
A new drug, VX-770, that is in Phase 3 of clinical trials is showing amazing results!! (More information in this New York Times article, too!) This drug directly works with the defective protein in patients with the G551D mutation, which only is about 4% of CF cases....BUT they're on the right track! Right behind this drug in clinical trials is another one called VX-809 which is going to be working with the most common mutation in CF patients (Delta F-508).
Each CF patient has 2 mutations of their CFTR gene (one from mom, one from dad) and doctors can perform tests to identify those mutations. I have one Delta F-508 mutation, and the other is unknown. So, the current VX-770 won't work for me, but it will help about 2,800 people world-wide! The next one coming up through drug trials, VX-809, might work for me to keep me living, laughing and loving!
This is what happens when all of YOU wonderful people make
