I'm Fighting For...

**Reposted from August 2010**

Quite often, I'm very fortunate to be asked questions by you guys that really make me think and evaluate where I stand on a particular subject. The following exchange that I had with a super awesome cyster and fellow CysticLife member was no different. We've had some tough goings lately in our little community and everyone has the right to, and does, react differently. Thank you for challenging me on this topic and really making me think about where I stand.

Message: Hi Ronnie, It's been a while since I have been keeping up with cystic life. Some of the reason is because I am busier now with Colton being out of school for summer and the other part of the reason is I get the blues. I am an optimist and a realist so I have great faith that I will live a long life, but also being a realist I will have moments of panic and fear at the thought that I know what this disease does to people and how fast something can go wrong. So I have a question for you I didn't want to post openly, do you hear everyone's story's, sad and inspiring and not get blue? How do I find a balance of being connected to the CF world without letting the sadness of some of it consume me? I put it like this to my grandma the other day, I can handle myself having CF it's my life I don't know any different, but what gets to me is that babies are still being born with CF and have to suffer and fight the battles we have been fighting our whole lives, that's what makes me sad, and I know a lot of CF'ers say the same thing about not knowing any different but as a mother seeing a child be affected by this disease is heartbreaking to me. It inspires me to do fundraising but it doesn't seem like enough. I sometimes feel we are being withheld from a cure because of the pure business of money making for drug company's. I'm sorry if I used this message to ramble or wasted your time, but I just wonder how you find the balance?

Response: So yes, I certainly read about and talk to many parents who have lost their children to CF and I myself have lost a handful of close friends. Whenever this happens I generally have the same reaction:

Compassion- I of course feel very sad for the family, but it is followed quickly by my next feeling;

Relief- I'm just so happy that the fibro or cyster no longer has to endure his or her pain and suffering;

Motivation- The fact that right now everyone born with CF dies with CF motivates me beyond no end to never stop fighting for awareness. At the very least, I want every person in this world to know what's killing my friends;

Self-reflection- I then think, am I doing everything possible to put myself in the best position to prolong and even possibly avoid the feeling of loss and despair for my family?;

I kind of look at our CF journey like this...we're all driving a car flying down the highway. Just the mere fact that we're driving in the car increases the chance that we'll get in an accident and die, having CF increases the chance that we'll get sick (have an accident) and see an earlier death than people not driving cars (non-CFers). Now, the question becomes, what do we do when we see a bad accident on the side of the highway? Do we completely stop our car and put ourselves in harms way? Do we see the accident and say a prayer for the people involved?

Do we slow down and hope nobody hits us from behind? Or do we see the accident, say a prayer for the people inside and then use it as a reminder that we better stay focused on the highway? We all know that if you focus on the accident for too long, you will definitely get in an accident yourself.

Now, you could say, "well what if I don't want to take my eye off the road and just drive (not be involved in the community)?" I would say that is a personal choice and one that many within our community make. For me though, it's a choice that I won't make. I like to see everybody else's car on the highway, how they drive, how they take care of their car, what color it is, who's inside, etc. I think we can really learn how to drive our car on the highway if we watch others around us drive theirs.

And yes, we're going to see some accidents, we're even going to see some accidents that result in death, but we're also going to see a lot of cool cars and meet a lot of great drivers. We're going to have the opportunity to meet some fellow drivers on the side of the road and let them ride in our car for a bit until they get a new one. Heck, we may even be driving a tow truck at the time and be able to carry them along for awhile.

As I look back at the highway I'm driving on, sure I see a lot of wrecked cars and tire tracks, but I see many more cars to the right, left, in front and behind me traveling just as fast or faster than I am. And if I see a wreck, I'm always willing to pull over and see what I can do to help, but I know that I'll have to get back into my car soon and drive.

Edit from Ronnie: Some of you may have just read that and thought to yourself "that sounded really insensitive". To be honest with you, when I read my words over again, if I were an "outsider", I would probably think that too. But for those of you who know even just a little about me, you know that I will do anything and everything for absolutely anyone in this community. My heart breaks every time we feel a loss, but it doesn't only break for the dead, it breaks for those of us still left here on earth. That's who I'm fighting for. I'm fighting for Josh. That's why I wake up everyday with a smile on my face and make sure that at least one more person in this world will hear the words Cystic Fibrosis. I'm fighting for Sara. That's why I thank God for her every morning. I'm fighting for Emily. That's why I will not stop until CF is a thing of the past. I'm fighting for Mandi. That's why I will never stop taking care of myself and loving those around me. I'm fighting for Kat. That's why I will do everything in my power to reach those in the CF community early enough to make a difference. I'm fighting for Jamie. That's why I try to answer as many questions as I can. I'm fighting for Kate. That's why I try to bring hope to the parent's of CFers. I'm fighting for Jesse. That's why I try to show the "normal" what our normal looks like. I'm fighting for us. That's why I was put here. That's why.

Outrun CF "Gobble Wobble" Virtual Race

I'd like to personally invite all of you to take part in this season's Outrun CF virtual race! CysticLife and the Rock CF Foundation have teamed up to put on this virtual event that ANYONE can participate in no matter WHERE you are! How cool is that?!?!

Here's the skinny -

Step 1 - Click here to register for the virtual race and to get more facts about the event. (You can also check out this blog to get another cyster's perspective on the event)

Step 2 - Spread the word! Share your commitment to the event with family and friends. Encourage them to sign-up and join you on race day.

Step 3 - Start training for the November 22nd virtual race (this can include, but not limited too - walking, jogging, skipping, crawling, eating better, jumping or doing nothing)

Step 4 - Get this awesome t-shirt (below) in the mail. You MUST register by today to be guaranteed your shirt by race day! You'll still receive a shirt if you register after November 1st, it just may not get to you in time for the race.

Step 5 - Get on CysticLife.org and share with the community what you plan to do for the virtual race and encourage others to join. Share your training tips with CL and of course update your profile picture featuring your groovy new shirt!

Step 6 - On race day, November 22nd, throw your t-shirt on and head out the door. Walk, run, jog or skip your selected distance at your selected location. Take LOTS of pictures and post them on the Outrun CF Facebook Fan page (be sure to become a fan if you're not already) and you can also feel free to tag me in them (I love seeing the pics!).

Step 7 - Give yourself a pat on the back and a big bowl of ice cream for a job well done...after your Thanksgiving feast of course!!

**The money raised by this event is evenly split between the Rock CF Foundation and CysticLife Foundation. We both use the money to support our programs that support the CF community**

Sound like fun? 

REGISTER TODAY!!!

My CysticLife "Job"

Here's another question I get asked quite a bit, and until now, have kept the answer between me and the person asking the question. I figured that it's asked enough though that I should just put something here on RSBR in case any of you are wondering the same thing.

I always hesitated talking about this publicly, because I don't want any of you thinking that I'm somehow self-promoting or asking you to give me a pat on the back. I don't want any of you however ever to think that I have any financial interest in bringing CysticLife to the community and want to make clear my motives - to make an immediate impact on the lives that were born with the same genetic disease that I was, no more, no less. Anyway, hope this clears some stuff up for some of you.

For you. CL is your "job" even though I feel sure you don't look at it this was. How do you make money from this? Do you take donations ? I'm sorry if too personal. You help so many with all of your knowledge and your responses are so quick - I was just wondering if donations are what keep it going?? 

CL is my "job" in that I devote well over 40 hours a week to it, but I do not make a single dime. In fact, my family "lost" money last year running CL.

CL has a for-profit arm (the website) and a non-profit arm (grant program and educational materials). Every dime we make through the website, promoting surveys, videos, etc, goes directly to our web developers salary. If we don't generate enough business to cover his salary, then we cover it.

For our non-profit arm, 100% of the money taken in goes to support our educational materials and grant program. We don't even allow any of the money to be used to run CL. We do take donations, however, due to an issue with our 501c3, we've had to freeze that for now. I pray we will be back up and running shortly.

Most of our donations came from private donors who appreciated what we're doing. I'm hoping that continues so we can continue supporting the CF community.

Toddlers and Treatments

I recently received a great (and very common) question from a momma in the CF community. I thought that many of you could relate to her question and I hope that some of you get something from my answer :)

I was curious to know when u were a child how did you feel about doing treatments?**** understands she does them to stay healthy but every now and again she will get upset while doing them and say things like "I wanna b like everyone else!" "none of my friends have to do this!"She is only 5, I know it's going to be hard to relate all this to her but I wondered how your parents helped u to understand. And if understanding even helped with the anger. And how to help with the anger they feel surrounding cf.Thank u for always answering these questions you are such a valuable resource to us parents!

That's a tough age and a common problem...

First piece of advice, always, like 100% of the time, follow through with the "law" you lay down. Even at a young age, if my mom said it was going to happen, it happened. She made it very clear that first came treatments, and then came whatever I wanted to do. She never backed down - not even once. I knew that if I fought treatments, my life would suck, and she would make sure of it 

My mom also made it clear that no one is "normal" - what is that anyway??  She said that some people have braces, some brown hair, some are tall, some are short, some are fast, some have glasses and some have cystic fibrosis. She also encouraged me to be very open about it as it's not something to be ashamed of or to hide from anyone.

Also, have you ever connected with Lisa Greene and read through any of her stuff. My mom, unknowingly, used many of the techniques that Lisa (mom with 2 kids with CF) teaches in her courses as well as writes about in her book. CysticLife also co-authored many of our materials with her that I would highly recommend that you read: http://www.cysticlife.org/cystic-fibrosis-reading-materials.php

Finally, there are many parents who make treatment time a great family bonding experience. They may only watch TV together during treatments, or play games, or braid each others hair, etc. In fact, I find myself doing that as an adult - only allowing myself to go on websites that I like IF I'm doing my treatment!

Hope I answered your question. Just remember - it's easier to start now and feel some short-term pain and angst then start later. Teach good habits before bad ones are developed.

Shoot, last thing - I promise that she'll thank you for it in the future. I've never heard a fellow "older" CFer say "I wish my parents didn't make me do so many treatments". I have however heard many CFers say "I WISH my parents would have made me do treatments". She may hate you for it now, but she'll love you for it later.

Germs at Work & The Best Compressor in the World!!

Had another great question thrown my way yesterday that I thought I would share as I'm sure that many of you have had similar thoughts or been in the same predicament.

I have a question for you...I totally respect your opinion and would love it if i could ask for it I have a little girl with CF I am looking at accepting a position in the ER...I will be going into rooms and registering them into the system. Do you think this would be putting her health at risk? I have posed this question to everyone at the hospital and they are of the opinion if I am taking the necessary precautions, I should be ok. The reason I am looking into this is because the hours work so that I can still stay home with her during the day. AAAAHHH....help???

I know CFers that work in the healthcare field and they've all been told the same thing as well - Do your best to protect yourself and use common sense. I wouldn't be too worried about it momma. Sounds like a great opportunity.

This was recently said on CL and it relates to your question...

"I work on a trauma floor and we have tons of sick people there. to avoid me bringing it home to my little cyster and fibro i avoid all contact with them right when i walk through the door and my shoes never see the inside of my house."

Could always do that if you'd like to be extra cautious.

Also, I worked for a couple of years in a homeless shelter and there was more sickness in that place than you could shake a stick at. My doctors gave me the same advice that I started with - Do your best to protect yourself and use common sense.

Hope that helps!!

******************

Also had another question from a momma concerning a compressor and my thoughts on the Mobilaire that I use. This is one of the most common questions I get, so I figured it wouldn't hurt to post this as well.

I saw on an old thread on CL that you use the Mobilaire 50 psi compressor. A few other friends either have it or are using it. So I am also polling them. What are your favs and not so favs about it? We will also have the VIOS or even the old Pro Neb Ultra for travel, but day to day is the Mobilaire worth the investment? Our clinic is supportive in writing the script since we have gone through so many PARI machines...

As far as a compressor...after I blew through 3 PARIs in 18 months, I decided that enough was enough. I went ahead and splurged on the Mobilaire and I haven't looked back since. It makes a WORLD of difference. The biggest thing the treatments take away from us is time. This compressor gives some of that time back. It literally cut my treatment time in half.

I travel with mine as well since I travel so often and it really affords me the opportunity to fill my travel days with stuff that I need to get done because I don't have to be at the hotel for hours on end doing treatments. It is a bit heavy to lug around, but for me it's worth it.

If you're looking for a compressor for day-to-day home use, honestly, this purchase is a no-brainer!! I couldn't encourage you enough to get the Mobilaire.

Favs - It's fast, effective and durable
Not favs - Wish it were lighter and less bulky for travel, but that would probably cut down on the power it has.

*****************

Thankful Thursday - Itches & Girl Power

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for fellowship. I'll be honest, I used to be the biggest social butterfly you've ever met. But as I've aged, I've turned the other way and actually avoid random chit chat as much as possible. However, whenever I'm actually at a social gathering, I really enjoy myself. This has been exactly the case with our small group. We meet every other Wednesday, and I always really enjoy our time with the couples in our small group. The conversation is always thought-provoking and I truly enjoy all the other couples in the group. I am so thankful to have a great group of people at our church to be in fellowship with. Also, Tuesday night for the first time a group of woman from my church got together to just hang out, and I am so thankful for the time we spent together, and incredibly thankful that we're going to continue getting together every other Tuesday.

I'm thankful that I've stopped being hungry ALL the time. The first trimester of my pregnancy I felt like I could eat a 6 course meal ALL day, every day. And as I gained a little more weight than I was "supposed to" I was a little worried. However, I have stopped feeling like I needed to stuff my face all day, so I think I'm eating quantities of food that are far healthier for me and for peanut.

I'm thankful for popcorn. I've always loved popcorn, and it always hits the spot. But I often don't think of it when I'm looking for a snack. However, I rediscovered my love of popcorn last night, and MAN am I thankful for that salty, buttery treat!!!

Ronnie's List:

I'm thankful for new connections made this week. It's seems like every week I am fortunate enough to talk to a couple new people from the CF community who I have previous not been able to speak at length before. I love getting the opportunity to connect on a deeper level and have the ability to share stories with each other. Every week is pretty awesome, but some connections that I've made this week are super awesome.

I'm thankful for my spur of the moment "itches to do something". I'm the type of person that if I get the urge to so something, I do it. Now, sometimes this is terrible and sometimes this is good. This week it was good. I had the sudden urge to clean our "catch-all closet". I'm sure that most of you know what I'm talking about. You know, that closet (or room) that collects everything that you don't have a place for. Well this week, I got the urge. As of right now it's not completely clean, but I'll tell you what, it look 1000 times better than it did on Monday!

I'm thankful for doctors that listen. During my last clinic visit I presented my doc with an new (but old) medication that I wanted to try out after hearing some good things about it on CysticLife.org. Without hesitation the doctor agreed to look it up and figure out the best way for me to get it. Within a week I was on my way to pick it up from the pharmacy. Thank you Dr. Daines!!

I'm thankful for the members of CysticLife. We were made aware today by the company that handles our server that CysticLife.org was coming close to using up all of it's allotted memory. What a great problem to have! Basically, being too active on the site is both bad and good...well bad until we can upgrade our server :) For the time being the site will have slower response time (we were able to make a few adjustments to improve response time today), but we're well on our way to making the necessary upgrades. What an awesome problem to have huh?!?!?

So, what are you thankful for today?

Thankful Thursday - Support the Freezers?

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. We had 3 brave souls join us last week in expressing their thankfulness last week and we're hoping that more climb on board today! I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.

Mandi's List:

I'm thankful for freezers. This may sound like a weird thing to be thankful for, but let me tell you what, our freezer saves us a TON of money. I can't imagine if we had to buy and eat everything fresh! We'd have food going bad all the time. It also makes dinner time easy when you can just pull out some frozen veggies, frozen chicken and vwalla!

I'm thankful for the TVs at our gym. We have been really good at getting in 30-60 minutes of cardio every time we go to the gym and a big part of that is because the time flies by since we're able to just watch tv shows. It's hard to say, "Naa, I'm done" when you're doing exactly what you'd be doing at home, only getting a work out in at the same time.

I'm thankful for email. My family constantly has emails flying back and forth with pictures from the day, forwarding on updates from work, filling each other in on happenings. It makes me feel like my family is really close, even with my parents far away. It's a nice, quick and easy way to stay plugged into each other's lives.

I'm thankful for friends who have been there/are there! I have been chatting with several ladies on CysticLife, Facebook and the phone who are all going through the IVF process right now, or have recently gone through it, and man am I thankful. It is so nice to chat with others about their experience, hear what to expect, and have someone who can relate to what you're experiencing. It's very awesome to have people to chat with!

Ronnie's List:

I'm thankful that although I've had some coughing up blood issues over the past couple of days, my PFTs haven't taken that much of a hit and I may be turning the corner. I'm not sure what brought on the sudden case of hemoptysis since I have been feeling great these past few weeks, but I'm just thankful that it wasn't worse. It can always be a little touch and go during times like this- I'm definitely going however!

I'm thankful for my upcoming opportunity to speak to the awesome folks at the Stony Brook CF clinic in Long Island, NY on Saturday. I was invited to speak at their CF education day and I'm always thrilled to be a part of these types of events. They fill a much needed knowledge and social gap in the community that I'm just honored to be a part of. If you're anywhere near Long Island, I'd love to see you there on Saturday!!

I'm thankful for a CF team that trusts me. Although I'm coughing up blood and my PFTs dipped a bit, they trusted me enough to make the call whether or not I needed a tune-up. I'm confident that this little set back was just a minor blip in the road and I'll be back on my game in no time. I of course promised them to keep up my four treatments a day, continue with additional airway clearance through exercise and hop on Cayston ASAP (which I'll be thankful for if it arrives tomorrow). It's so comforting to have trust amongst myself and the team, but I have a feeling it stems from two things: They know I love feeling good and they know I'll do anything to feel good.

I'm thankful for support. I feel support all around us coming from it feels like 1000 different places and people. We have great families, first and foremost, but we also have amazing friends and an amazing community behind us. Throughout this whole IVF process, we've been able to connect with others who have gone through (or are currently going through) similar situations on CysticLife. It's nice to be able to throw any and every question out to them and know it will be answered promptly, honestly and with eagerness to help.

Nothing but Notes - Denufosol, Pixel Award, AHCCCS

This week, it was announced that the drug from Inspire Pharmaceuticals, Denufosol, had failed. Hoping to achieve an increased FEV1 after a Phase 3 48 week trial, the increase in FEV1 ended up being negligible. This came as quite a shock because the Phase 2 study of the drug was hailed as a major success. I was personally surprised after speaking with multiple CFers about the drug and hearing that it was doing wonders for them, whether it was increased lung function, increased mucus production or just a "feeling better" response. I admit, I had a lot of hope for this drug and was shocked and saddened to hear the news. I'm left with more questions than answers on this one.

On the bright side, and completely unrelated, CysticLife won a website award (The Pixel Awards) for the People's Champ choice of Best Blog of 2010. That's quite a mouthful! Anyway, we're super happy about it and so thankful that we're able to get some more recognition for the CF community. Anytime that we can get people to hear the words Cystic Fibrosis is a victory for us. Get enough of those small victories and they'll really start to add up. If you haven't yet signed up for an account on CysticLife.org, I would highly encourage you to do so. And, if you sign up before January 11th, you'll be eligible to win an iPad!

Locally, there is quite a storm brewing over the recent decision by the Arizona government to cut funding for transplants for people on AHCCCS. I know some of the people who are or will be affected by this personally, and I just can't wrap my head around this one. I'm all for tightening the budget, and I'm no math major, but I would bet my bottom dollar that cuts to the budget, that won't allow people to die, could be found. I mean, there are some people on the transplant list who have worked their whole lives, paid into the system, and when they need the system the most, it fails them. Cannot explain that one.

Dear Parents...

I saw this blog over on CysticLife and wanted to share it with all of you...

I can not imagine what went through your minds and hearts when your child was diagnosed with CF. I have always felt i should help parents by giving them some tips. I am not a parent with a child who has CF but i am a wife of someones child who has CF.

From the second I met my husband i knew he was special. We were in highschool and every once in a while he would miss school because he was sick. I never knew the severety of CF because it didn't define him. He was very smart, determined, had a rock band, was drum line captain and worked. It wasn't until we got serious that his disease ever came up. His parents have always had high expectations of him and his abilities and never allowed him to be a victim.

I know as a parent you may feel helpless at times and that there is nothing you can do. The best thing you can do for your child is treat them the same way you would if they didn't have a disease. I can not thank his parents enough for raising him this way and helping me to pick up and follow their lead. The reality is it sucks at times and you can get sad or pissed at the world, but then get over it. It won't change anything. There are some things you can't control, but your attitude towards them is 100% in your control.

I want you all to know you have the opportunity to raise a child who can inspire many and experience a full life. My husband has gotten to go to college, get married, have a successful career and now we are attempting to have children. I understand not all kids are as fortunate as my husband has been, but give them the tools and strength to have a chance. I hope to one day have my own children and I will teach them how to live their life and never feel like a victim.

Have hope in your childs future. My husband is 28 and we will celebrate 5 years of no hospitilization in February. There is no cure but there are great doctors and treatments. Giving your children strength and determination to deal with the life they were given is the best thing you can do for them.

Thank you Cheryl for writing such a powerful blog. I thoroughly enjoyed reading it.

Big Weekend Ahead: National Adoption Day and CFF Gala

**Post written by Mandi

We have an exciting weekend coming up. We've got all of our Tucson family coming up to Phoenix for an AWESOME celebration. Our cousins, Tim and Gina, are finally making their little man an official part of the family on Saturday, National Adoption Day. The whole family is getting together to celebrate on Saturday, and again on Sunday for his Christening. We couldn't be more excited for them and are really excited to have the family all up in our neck of the woods for the celebration - we'll be sure to post pictures so you can see what we did and just how cute there baby boy is...we're talking Gerber baby material.

We're also excited because Saturday is the CysticLife Breath of Life Gala in Tucson. This year, CysticLife is the title sponsor for the great event put on by the CFF and we're excited to be a part of it. So we'll be headed down on Saturday evening to enjoy a fun night at the Skyline Country Club, honoring Paul Lindsey and Kathy Alexander. The emcee will be Mariana Valencia. If you're in the Tucson or Phoenix, or shoot, anywhere in AZ, and have Saturday night free, pick up a few tickets here and join us. We'd love to see you!! We're hoping to raise some serious moola for the CFF.

And then Sunday, after the Christening, it's a mad dash home to hopefully get some outside work done before the sun sets. (Is it just me or does the sun seem to be setting WAY too early? It feels like I barely finish lunch and the sun's already going to sleep on me. For a girl who has trouble stay awake in the evening, an early sunset doesn't help!!)

We'll be sure to take lots of photos and post them. If you're lucky, I may even get a photo snapped of Ronnie in DRESS CLOTHES - and as an adoring wife, I think he cleans up pretty darn well :)

Dallas In Pictures

We didn't get a whole lot of pictures taken during our trip to Dallas (we're both pretty bad at remembering to break out the camera), but I have managed to put up about 75% of them.

Not sure what's going on here.

Mandi taking a picture of me taking a picture with my phone of the big board leading into the Farmer's Market.

Said Farmer's Market

I'm going to have to find one of these near us. It ALL looked so delicious.

Representing The Cats

Sometimes I feel like a nut, sometimes I don't.

Coke with real sugar??? Where do I sign up?

Outside of the Granada Theater for the super awesome CF Concert Series.

Sound check before the show.

The bar.

Setting up the CysticLife table.

Apparently I'm excited that we're all set up.

Informational handouts about CF.

Special VIP sing-a-long with Rhett Miller

Just livin' the dream.

In Dallas? Join us for this sweet event!!

We're here for the second year in a row to take part in the CF concert series here in Dallas, TX. We had a great time at last year's event and are looking forward to another successful event this time around. If you're near or in the Dallas area, we would LOVE for you to swing by and say hi. If you can't make the event, contact us (ronnie@cysticlife.org) anyway and maybe we could do coffee or something.

Anyways, here are the event details:

What: CF Concert Series

Who: Rhett Miller, Ben Kweller, The O's

Where: The Granada Theater 3524 Greenville Ave. Dallas, Texas

When: November 6th @ 6:30pm VIP or general admission at 8:00pm

How (much): VIP - $75 General admission - $25

Why: Why not?

CF concert series info:

The CF Concert Series was started in 2007 as a small effort organized by a few local music fans with a personal interest in helping to find better treatments and a cure for Cystic Fibrosis. Cystic fibrosis, or CF, is a life‐threatening genetic disease affecting approximately 70,000 children and adults. However, there is no government funding for CF research. All research and progress towards finding better treatments and a cure rely on funding from community events and fundraisers.

The series, held annually at the historic Granada Theater in Dallas, TX, aims to raise money for Cystic Fibrosis with an emphasis on adult research. Since the first concert in 2007, the CFCS and its participants, such as Rhett Miller of the Old 97’s, have helped to raise almost $100,000 towards the cause.

The CF Concert Series is put on by the Breathe Easy Foundation (BEF). The goal of both the CFCS and the Breathe Easy Foundation is to help raise awareness of the disease and funding for the great strides being made towards CF research. All BEF proceeds go to the Cystic Fibrosis Foundation.

Hope to see you there!!!

Running Buddies Online?

**Post written by Mandi (I'm really messing things up this week. Post on Saturday, post on Wednesday, but slacked on my Mandi Monday!)

If you haven’t heard already, the Rock CF Foundation and CF rock star, Emily Schaller, is holding a Rock CF Rivers Half Marathon and 5K on March 20, 2011 in Grosse Ile, Michigan (Get details here: http://www.outruncf.com/). It will be the first half marathon specifically for CF. If you live in Michigan, anywhere remotely close, or are a baller and can fly there for the race, start training and go!!!

BUUUUUT for those of us who aren't lucky enough to be there in person, Rock CF and CysticLife has teamed up on a new concept so we too can participate! The concept: Out Run CF Virtual Run. It's the race of the future! You can run this race from anywhere in the world. So the race is a way for everyone to participate, get some new "virtual" running buddies, and get into shape. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! I mean, if you can now find love and make BFF's online, you might as well be able to make running buddies online too! Right?

Participants will find a route or race by their house; report back to their fellow virtual runners online as they train; and then on March 20, 2011, EVERYONE will lace up their joggers and hit the road in their Out Run CF shirt (which you receive when you register for the race).

And here's the best part (in my opinion) people choose their mileage. 1 mile? 5K? 10K? 10 Miles? Half Marathon? Marathon? It's doesn't matter! Nothing is too short or too long, too fast or too slow. The goal just to get the entire CF community out of the house and into their running shoes on the same day.

So again, here are the hard facts:

Who: EVERYONE

What: An Out Run CF Virtual Race held by Rock CF and CysticLife

When: March 20, 2011

Where: ANYWHERE

Why: Because anyone can run – whether it’s for a minute or a marathon! Together, we can Out Run CF.

How: Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-2011

Helpful Sites to Get You Started:

DailyMile.com – Make an account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com – Join the Out Run CF group to see just how many people are outrunning CF and connect with them!!

Runnersworld.com – Get inspired, find training programs.

So definitely check it out. Ronnie and I will both be training for the race using dailymile.com and connecting with other runners on CysticLife and Facebook. And so far there looks to be a decent group - people are already registering and there's a growing group on the Out Run CF Facebook page. I'm just excited to have an "excuse" to run, and I have to admit, I'm really excited about getting an Out Run CF T-shirt - maybe not the best reason to run...but hey, whatcha gonna do, right?!

We left our heart in San Fransisco...

...but with that said, we're SO GLAD to be home. Our trip was great. Work was great. Friends were great. Event was great. Nothing beats being home though.

I'm sure we'll have some stories for you about the trip, but for now, all you get is our trip in pictures. We landed about an hour ago and we're sleepy :)

There's about 162 more pictures and videos, but I'm nodding off while downloading these. I'm sure you'll see some other pics in upcoming weeks...maybe even some for the What the ____?? contest!