Saturday, January 23, 2010

Can CF Teens and Parents Find Common Ground??

A good friend of the CF community and puppet master Josh Mogren, brought up a great "debate" question over on that I wanted to get the RSR reader's take on:

I have spoken with a few teenagers who claim that their parents are too overwhelming of a presence in their lives. While this is common place among most teenagers across the globe, what happens when you add Cystic Fibrosis to the equation? Teens feel trapped by their parents because they don't feel like they are allowed to make their own choices about their lives and learn from their mistakes. Most parents I have talked to say the reason that they are so concerned for their children is because they don't see their children doing the best they can with their healthcare and daily routines that would improve their lives. Some have seen other people's children pass away from CF and fear the possibility that this might happen to their child. So they refocus their energy toward making sure their child thrives. The parents feel (rightfully so in some respects) that they have given their blood, sweat, and tears to their children and that CF lives are too precious to learn from mistakes because the results are far too costly. CFer's and Parents....let's honestly discuss...where can we meet in the middle? How can teens understand their parents point of view and earn their trust? How can parents learn to start letting go and trusting their children? Positivity and respectful responses are a must! This is thin ice territory, but it must be traveled on...

Parents, what do you think? What is your responsibility to your child and at want point does that responsibility shift? Teens, when can you begin to shoulder some of the burden for your "cystic life"? What's the best way for your parents to handle this transition?

If you'd like to view the answers over on CysticLife please click here.

Friday, January 22, 2010

My First Ever Chinese Train Station Experience

I ran across this video and I thought I'd share it with you guys. This is from January 2009 about 24 hours before I came down with a CRAZY chest cold that landed me in the hospital for 50 days and started my journey to creating this blog. I think the commentary throughout the video is pretty entertaining, as are the crazy stares we get from most of the locals. Enjoy!!

Thursday, January 21, 2010

Thankful for Fun!

Thought I would dig this video out of the archives for Thankful Thursday. I'm always thankful for events to raise money for CF and I'm even more thankful if I get to do fun "commercial" spots for them!

I'm starting to miss my long hair...wait a second, no I'm not.

Wednesday, January 20, 2010

Put Your Health at the Top of the List!!

I can't stress this enough, working out consistently is tough. I mean, we all have lives. We all have a million things going on. We all have friends to hang out with. We all want to watch TV. We all want to work...ok, maybe I took it too far, but I do in fact want to work! We all have about hundred things that we'd rather do than workout. Here's the problem though, there is nothing that we can put before working out that is going to make a more positive impact on our health.

So what happens when we put all of those other things in front of working out? We're saying loud and clear that all of those other things are more important than our health. We're saying that we'd rather do those things sick, than spend an hour a day working out to do those things healthy. Don't think that's the truth? Then you're lying to yourself. The bottom line is we put things at the top of our priority list that are most important to us. You may have a million other things going on, but like it or not, you are CHOOSING not to take care of yourself. Problem is, choosing not to take care of yourself when you have CF can cost you more than good health.

I'm a big personal responsibility kind of a guy. You can replace all of the "we" or "you" in the last paragraph with "me" or "us" or "I". I haven't been putting my health as my number one priority for a while now. Sure, I'm still going to the gym once in a while. I'm still getting out for walks and occasionally a run. But that's just not good enough. I'm not just saying that either, I'm feeling it, and when I'm feeling it, is when I've definitely had enough.

So today we decided that we were NO MATTER WHAT going to be working out like we should be. It started with a walk in the morning and we had planned for a run or hike later in the afternoon. Wouldn't you know it? Just as we were getting our shoes on to go for a hike, the skies opened up and it started pouring. Now this is Arizona, it doesn't rain but once or twice a decade! It would have been really easy to just throw in the towel and say "hey, there's nothing I can do about that", which believe me, I thought about.

Instead, we packed up and headed to the gym. It ended up being a great workout and I'm of course glad that we forced ourselves to do something no matter what. It feels like such a bigger accomplishment when you push through or even drag yourself to do something.

I would just encourage all of you not to be like me this last week. Put your health as your number one priority. Cause the fact of the matter is, if you're not healthy, you won't be enjoying all of those other things for long.

Tuesday, January 19, 2010

The Top Ten Foods That Make Me (CF) Bloated

**I've posted this before, but a great discussion about this topic on made me think to post it again**

I wanted to follow up on Mandi's great post yesterday about bubbly guts and digestive enzymes. I've compiled a list of the top ten foods/drinks that make me bloated...and not just bloated, CF BLOATED. These are very specific items from very specific places, but believe me, pizza doesn't have to be from Peter Piper to make me feel pregnant. I created the list in this manner because it also gives you some insight into 10 of my favorite things to gorge on. In fact, the little number to the right of the item would be how I would rank them in terms of my favorite to consume.

10. Frosty from Wendys (1)

9. Brachs Jelly Beans (3)

8. Red Stripe Beer (10)

7. Fried Steak Fingers from Lucky Wishbone (4)

6. Chicken Planks from Long John Silvers (6)

5. Shamrock Chocolate Milk (8)

4. 1/2 Pound Beef Combo Burrito from Taco Bell (7)

3. Sausage, Egg and Cheese Biscuit from McDonalds (9)

2. Pepperoni Pizza from Peter Piper (2)

1. Chicken Fried Rice from Pei Wei (5)

So what foods or drinks make you the most bloated? Please be as specific as possible because I would love to try your suggestions. I know, how stupid of me :)

**I did not receive any monetary considerations nor do I represent the above food products in any official capacity...unless of course they are interested. There, that should cover my butt from this new law**

Monday, January 18, 2010

We Sure Do Have a Great Life Don't We?

I know that Thursdays are the days to be thankful around RSR, but I've felt so blessed this week that Monday is the new least this week. Here's a little look into all the great happenings this last week that I am so excited about.

One HUGE blessing this week was the opportunity to spend some time with my dear friend and maid of honor, Lenore. Lenore and I went to high school together and we have remained great friends through college. We went to school just far enough apart (I went to Syracuse and she went to America) that we never saw each other. I saw her for a few hours last year, but that wasn't nearly enough. As you can tell, this visit was much needed and we had a great time catching up. She is one of the most amazing people and it was so incredible getting to spend time. She also had her boyfriend, Mo, with her, and it was awesome to get to meet him. He might be one of the only people I've ever thought was good enough for my Lenore :)

Another HUGE blessing this week was the launch of CysticLife and the incredible support we've received. We had a great week in terms of numbers, a ton of unique visitors, tons of page views, and over 570 new members signed up. The numbers are great, but I can honestly say there was
something else I noticed and realized that just warmed my heart. I haven't been a part of the CF community for that long, and I knew that it was a great group of people, but this week brought my understanding to a whole new level. The feedback and support everyone offered us was incredible. We didn't have too many glitches, but any issues we had people were willing to work through with us. Some people had spent hours on something, and then lost it due to a glitch, and instead of being frustrated and upset, they just tried again and told us it was ok. I can't tell you how much anxiety we had over releasing the site to the wolves and I can't tell you how incredible it has been thanks to this great community. I know a lot of you were over on the site, and some of those people that just hung in there with us through the kinks, so I wanted to say thank you. I feel so blessed to be a part of this community!

The wedding plans are coming along also, which is obviously exciting and feels like a huge blessing. As you know, I have the dress and we had the venue picked. This week we have met with an invite person and have samples on the way, looked at bridesmaid dresses, set up an appointment with the florist, got the contract signed for the venue, so we can move forward with tastings. It feels like it's all coming together, and the best part is, I've been so wrapped up in launching CL, I haven't even really been stressed about it (which if you knew me, and my affinity for worrying you'd know that was HUGE).

Life is good. Plain and simple. Sometimes I get caught up in all of the "stress" and to dos, but this week I sat thinking about how grateful I was for the last week and just life in general. Apparently Ronnie was feeling the same way, as we sat in my kitchen, he gave me a hug and said, "we sure have a great life don't we?" So, so true...Life is good!!

Sunday, January 17, 2010

Cystic Fibrosis History and Timeline

Note from Ronnie: I cannot guarantee the accuracy of this timeline nor the information presented as I did not write it nor do the research for it. I did however find it very interesting and wanted to share it with you guys. If you see any distorted "facts" or major discrepancies please let me know so I can be further educated on the history of CF. Thanks!

Middle Ages
- In medieval folklore, infants with salty skin, a symptom of cystic fibrosis, are considered "bewitched" because they routinely die an early death. "Woe to that child which kissed on the forehead tastes salty. He is bewitched and will soon die." This bit of folklore, handed down through the ages, is an early description of the disease now known as cystic fibrosis. This is one of the earliest references to cystic fibrosis. Folklore from the Middle Ages, from Germany and Switzerland, made this reference. The earliest documented reference in the literature is from 1606, Alonso y de los Ruyzes de Fonteca, professor of medicine in Spain, wrote that it was known that the fingers taste salty after rubbing the forehead of the bewitched child.' This is a clear reference to the fact that children with cystic fibrosis have very salty sweat, due to the abnormal protein manufactured by the cystic fibrosis gene. This protein regulates the movement of sodium and chloride from the body's cells. Sodium and chloride are two components of salt. The sweat glands of a person with cystic fibrosis secrete too much salt, and the person tastes salty. This is also a reference to the fact that in earlier days, people with cystic fibrosis did not live past infancy.

1936 - Fanconi refers to the previously nameless condition as "cystic fibrosis with bronchiectasis."

1938 - Andersen of Columbia University develops the first comprehensive description of cystic fibrosis symptoms. CF also named Mucovicidosis.

1949 - Lowe establishes that cystic fibrosis is a recessive genetic disorder.

1953 - After observing excessive dehydration of cystic fibrosis patients during a New York City heat wave, di Sant' Agnese of Columbia University formally reports to the American Pediatric Society that CF patients secrete excessive amounts of salt in their sweat. This observation leads to development of the sweat test as a diagnostic standard for cystic fibrosis.

1955 - A group of volunteers, including parents of children with CF and physicians meet to form the CF Foundation, headquartered in Philadelphia; among the group is Milton Graub, M.D., a pediatrician and father of two children with CF, who later becomes the CF Foundation’s third president and who remains active in the CF Foundation today; life expectancy for people with CF is 5 years old.

1961 - The CF Foundation establishes the first CF care centers; CF Foundation hosts first conference of CF care center directors.

1962 - Additional CF centers established, bringing total to 30. Predicted median survival increases to about 10 years.

1965 - CF Foundation begins clinical fellowship program; George Frankel, a CF Foundation founder, establishes Guidance, Action and Projection conferences, a fellowship program to bring basic scientists into the field of CF research.

1966 - CF Foundation establishes Patient Data Registry, which tracks the histories of patients treated at CF care centers.

1968 - CF Foundation hosts first National/International Medical Conference.

1972 - First national seminar on needs of young adults with CF held by CF Foundation.

1978 - Headquarters moves to Washington, D.C. to be close to the federal government and the National Institutes of Health (NIH); first nationwide fund-raising event held, called Bowl for Breath, nearly doubling the fund-raising dollars for CF. The number of Cystic Fibrosis Foundation-accredited care centers now total 125.

Early 1980's - Researchers associate organ damage caused by CF with a malfunction of the epithelial tissue.

1980 - Robert J. Beall, Ph.D. comes to the CF Foundation as medical director from NIH.

1981 - Satellite CF care centers for adults were established for the first time; life expectancy reaches 20 years.

1982 - The CF Foundation creates the Research Development Program (RDP) to encourage leading academic and scientific institutions to establish centers of excellence in CF research; Doris Tulcin, Chairman Emeritus of CF Foundation, launches a capital campaign—the first of its kind by a voluntary health agency—to raise $15 million to support the creation of the RDP; Robert K. Dresing becomes volunteer president of the CF Foundation, later becoming the first president and CEO.

1983 - Scientists show that cells lining the lungs fail to properly move chloride into the airways; the Orphan Drug Act is signed into law and provides companies with financial incentives for developing drugs for rare diseases like CF; Frank Deford, sportswriter and novelist, writes the book, Alex: The Life of a Child about his daughter who died from CF at the age of 8; Deford becomes Chairman of the CF Foundation’s Board of Trustees.

1984 - American Airlines, Outstanding Corporate Partner of the CF Foundation, hosts the first Celebrity Ski event to benefit the CF Foundation.

1985 - Life expectancy reaches 25 years.

1986 - The movie, “Alex: The Life of a Child” appears on ABC putting CF in the national spotlight; CF Foundation tops $20 million in fund-raising.

1988 - CF Foundation establishes Cystic Fibrosis Services—a specialty pharmacy—to provide availability, access and assistance with the complex insurance issues faced in obtaining CF medications.

1989 - Francis Collins, M.D., Ph.D., John Riordian, M.D., and Lap-Chee Tsui, Ph.D. discover the CF gene with support from the CF Foundation’s RDP; CF Foundation hosts first GREAT STRIDES walk-a-thon, now a $20 million+ annual fund-raising event. A Team led by Tsui and Riordan of the Hospital for Sick Children in Toronto discover the gene responsible for CF and name its protein product cystic fibrosis transmembrane conductance regulator (CFTR). The gene is mapped to chromosome 7q.

1990 - CF researchers achieve test tube “proof of concept” for gene therapy.

1993 - FDA approves Pulmozyme, the first biotech drug designed for CF, which breaks down thick CF mucus following studies in CF care center network; first gene therapy tested in person with CF—shows gene therapy corrects CF cells in nasal passages; CF Foundation and NIH establish nine gene therapy centers for CF studies; Beall becomes president and CEO of the CF Foundation; The Boomer Esiason Foundation redirects its mission to support the CF Foundation when Esiason's son, Gunnar, is diagnosed with CF.

1996 - The Seattle Breath of Life Gala, which has raised more than $24 million since its inception in 1984, becomes the CF Foundation’s first “million dollar event,” raising $1,002,500 in one night; CF Foundation forms public policy alliance, a grassroots group of volunteers who inform policy decision makers.

1997 - FDA approves TOBI, an inhaled antibiotic, after CF Foundation-supported studies showed safety and efficacy; CF Foundation establishes the Therapeutics Development Program (TDP) with seven centers in the Therapeutics Development Network (TDN); CF Foundation forms Adult Task Force to address specific issues facing adults with CF.

1999 - Bill and Melinda Gates Foundation gives the CF Foundation a $20 million grant for drug discovery; Cam C. Cooper is named Chairman of the CF Foundation’s Board of Trustees.

2000 - CF Foundation-supported researchers complete map of Pseudomonas aeruginosa genome; CF Foundation establishes CF National Bioinformatics Center to help spur discovery of new treatments; CF Foundation awards contract to Aurora Biosciences for up to $46.9 million for CF drug discovery (the largest grant of its kind by a nonprofit organization); CF Foundation establishes Cystic Fibrosis Foundation Therapeutics, Inc. to govern CF Foundation’s drug discovery and evaluation efforts.

2001 - Tom Marsico, CEO of Marsico Capital Management, LLC, commits $25 million over several years in support of the TDP; CF Foundation makes first multi-million award for drug development with Altus® Pharmaceuticals, Inc. to develop TheraClec TM Total, a potentially more efficient pancreatic enzyme.

2002 - Results of CF Foundation-supported clinical trial on azithromycin show that the drug is effective in improving lung function in people with CF; the TDN expands to 18 centers.

2003 - Targeted Genetics, Inc., with CF Foundation support, begins a Phase II CF gene therapy trial that represents the largest and most advanced gene therapy trial for CF to date; CF Foundation tops $150 million in fund-raising; CF Foundation launches Volunteer Leadership Initiative, to bring 2,003 new volunteers to the CF Foundation in 2003.

2004 - Results from Inspire Pharmaceutical’s CF Foundation-supported clinical trial of INS37217 to restore ion transport demonstrate both safety and improvement in lung function in people with CF; pipeline of CF therapeutics in development includes nearly two-dozen potential therapies; CF Foundation recommends nationwide newborn screening for CF at North American CF Conference, which now includes nearly 3,000 attendees; life expectancy increases to the mid-30s.

2005 - Predicted median age of survival increases to nearly 37 years.

2006 - Cystic Fibrosis Foundation Therapeutics-supported studies in Australia and UNC show that hypertonic saline helps clear CF mucus and becomes a therapeutic option.

2006 - The first compound for CF, discovered through high-throughput screening at Vertex Pharmaceuticals, begins clinical trials.

2006 - Inspire Pharmaceuticals begins Phase 3 clinical trials of its innovative denufosol drug to hydrate and clear CF mucus.

2007 - VX-770, a potentiator candidate developed by Vertex Pharmaceuticals, entered Phase 2 testing. This drug may restore the function of the CFTR protein. Vertex also is working to develop corrector candidates, which aim to improve the function of the CFTR.

**The original post was taken from**