Making Strides To Cure Found

Fired Up

2012-01-10T07:53:00.000-08:00

I hate Cystic Fibrosis. A very haunting thing showed up on our doorstep Sunday Morning. We get the paper every Sunday. I'm accustomed (at least in football season) to promising myself I'll read it, but never getting around to it. Well, this weekend was the same, until Alicia saw what was on the front page. I didn't read the article right away because I saw how powerful it was and the effect it

How to Approach the New Year

2012-01-02T10:36:00.001-08:00

I've been thinking a lot about cystic fibrosis lately, mostly because of a situation facing Samantha right now. Her weight has been a struggle since she was born. I think her previous doctor would talk to us about her weight at every visit. She was always too far under 50%. We moved here to North Chicago a little over a year ago and checked in with the wonderful CF team at Children's Wisconsin

Samantha's Surgery

2011-10-09T08:33:00.000-07:00

Samantha is still recovering from a 3-procedure surgery. None of it is anything new for you CFers. She had pretty much the usual gammut of things. They took her tonsils, her adinoids, and they did a sinus surgery, opening up her right side. Since this was Samantha's first surgery, Alicia tried to prepare her as best as she could. She made a cake, and Timothy even read a book about tonsils!

A Blog Apart

2010-12-01T19:46:00.000-08:00

I have enjoyed writing about cystic fibrosis, our plans to eliminate it, and the hope for a cure, but unfortunately, I've been unable to update it consistently. I do have another site and sometimes I do write on it. Click the link below to see a sample. Thank you for visiting and enjoy the blog! Click here for a Sample.

Team Boomer at the San Diego Bay Bridge Run!

2010-05-24T21:43:00.000-07:00

There has been another sighting of Team Boomer near San Diego! This time, I ran the 24th Annual Bay Bridge Run! I was even on television! Ok, so it wasn't much. You could barely see me as a ran past the camera, but I was on tv! I don't have much to say about the race. It was only 4 miles, which is a standard training run for me after all. I finished it in 36:57 officially, although it wasn't a

Getting a Word In

2010-04-30T05:49:00.000-07:00

I had the wonderful opportunity to speak to a class of graduate students on Tuesday of this week. The class was studying mental health issues and the presentation was on particular stresses that the military puts on military children. As the father of two military children, I was a perfect fit. My key issues came down to the pros and cons of the military for our kids and the kids of other

Team Boomer at the La Jolla Half Marathon

2010-04-28T05:48:00.000-07:00

I don't know if I am the first person this year to run with the Team Boomer logo, but I definitely had a great opportunity to start spreading the word at the La Jolla Half Marathon this past Sunday. I will say this about the La Jolla Half...IT WAS BRUTAL!!! Never in my life have I been in so much pain the day after a race. I mean serious pain. However, considering the fact that I was cleared to

Team Boomer

2010-04-24T05:38:00.000-07:00

Tomorrow I will run for the first time as a member of Team Boomer. I plan on displaying some of my new training items proudly to show everyone who I'm running with. Granted, the New York City Marathon isn't until November, but now is the time to start showing my colors! So even though I don't expect much tomorrow at the La Jolla Half Marathon, it is a start on my trek toward the NYC Marathon.

Why am I Running the New York City Marathon?

2010-04-18T10:05:00.000-07:00

For those of you who don't know...I'M RUNNING THE NEW YORK CITY MARATHON! I am absolutely stoked! I can't tell you how excited I am! I can't believe I'm going to be running in the biggest marathon in the world! But what I'm more excited about is why I'm running the biggest marathon in the world. I'm running on Team Boomer, the athletic team of the Boomer Esiason Foundation. Many of you know

It's been awhile

2010-04-13T16:55:00.000-07:00

It's been awhile since I've written. I would make an excuse, but it wouldn't fix anything, so I'll just say that I'm very grateful for your patience. Things have been interesting here. I wanted to start back up after reading the story of a boy named Conner. It's been a real kick in the pants, reading about the boy. I have no excuses for not being more in the game. I have a daughter who turned 4

The Second-Chance Charity

2010-02-04T00:06:00.000-08:00

My wife and I give money to our church. While I understand that not everyone who reads this blog is a Christian or even a church-goer, I think we probably all have people in our lives who go to church and give to church work. Alicia and I believe whole-heartedly in missions, particularly overseas, but at home also. Because we believe this way, we give this way. But we also believe in finding a

Samantha's Joy

2010-01-31T13:13:00.000-08:00

Alicia and I are proud to announce the launch of Samantha's Joy, our 2010 Great Strides Fundraising program. As you may recall, we asked for suggestions from readers on what we might call our team, and through this process we settled on the name "Samantha's Joy." We are both excited to begin the process of raising money for the fight against cystic fibrosis. So Team Sam is now Samantha's Joy.

Take a pen with you.

2010-01-28T05:58:00.000-08:00

And a notepad. A friend of ours suggested that I bring this to light for the newbies among us, those who are dealing with the reality of cystic fibrosis for the first time, or are otherwise new to the disease. I liked that idea very much as it is one that has served Alicia and me many times. We like to research things. Alicia is better at it than I am, and I think that’s because she knows what

Help us name our Fundraising Team!

2010-01-27T06:02:00.000-08:00

We need your help! Alicia and I have used the name "Team Sam" for the last two years as a title for our Great Strides fundraising program. Yet this year I'm ready for a change. I want something that is a little more inspiring and maybe a little more powerful to represent us. Most importantly, we want something that is more uniquely us. While "Team Sam" represented what we were fighting for, and

Carlsbad Half Marathon Results

2010-01-24T21:58:00.000-08:00

Ok, I'm not going to lie, I really don't know what goes into a race report. I have been reading some for a few weeks now to try and learn how to do this, but I confess I don't know what I'm doing. I'll get better at it because I'm definitely going to do another Half Marathon! And another! Oh, I love this stuff! Runner's High??? Oh yeah! Race start! I was way back in Wave 6 at the start of

Heroes of the Marathon Presentation

2010-01-22T23:41:00.000-08:00

Tonight was simply amazing. I had the best time in the world at the Carlsbad Marathon Heroes of the Marathon Presentation. I feel honored to have been nominated by the staff of San Diego's Cystic Fibrosis Foundation, and honored even more by being selected as one of the Heroes of the Marathon by the marathon committee. In so many ways, I feel like I have not deserved this honor. Standing up

Final update for Carlsbad Half Marathon

2010-01-19T06:55:00.000-08:00

As you can see by the little ticker to the right, I am a scant 5 days away from running the Carlsbad Half Marathon! I feel fairly confident that I will do well, certainly finish (barring injury). My hope is to run it in less than 2.5 hours, but honestly, as long as I finish I will be extremely happy! Like most of our events, I am tying this to the Cystic Fibrosis Foundation (CFF). Right now I am

Featured Fundraiser

2010-01-13T12:53:00.000-08:00

I am so thankful for the blog: A Small Change. I have enjoyed reading it for a few months now, but I'm particularly grateful for the opportunity afforded to me by Jason Dick, the writer. Today I am the Featured Fundraiser. Thank you Jason! And if you're coming to Strides from Jason's blog, please feel free to check out our fundraising section to glean any ideas you can use! Thanks!

Fundraising Blogs

2010-01-07T08:28:00.000-08:00

Some of you may remember a post a while back about fundraising blogs. In that post (get it here!), I wrote about one blog I follow in particular. Thankfully, another fundraising blog has done some great work for me. I haven't been able to get through all of these blogs yet, but the writer gives a list of great blogs to go to for fundraising help. Here is the list. It's about time to start

“I want Love Pats”

2010-01-03T23:08:00.000-08:00

It's just shy of 11:00 pm in the Smith household. I'm watching a very comforting scene. Alicia has Samantha positioned over a pillow, slightly bent backwards so that she can perform one of the chest physical therapy positions on Samantha. For her part, Samantha is patiently doing whatever her mother asks her to, her only request being to be able to watch her Disney video. Samantha has been ill

Fundraising in December: Stair Climb Event!

2009-12-31T12:02:00.000-08:00

Team Sam participated, by way of members of the USS Antietam 1st Class Association, in the 2009 Stair Climb in San Diego. I was very happy to be joined by three members of our 1st Class Association, Tony, Steve, and Greg. We didn't raise much money as this was mostly a show of support and we use Great Strides as our primary fundraising vehicle. Still, we had a great time and Greg even walked away

Orders Nightmare

2009-12-29T23:40:00.001-08:00

Commit to the LORD whatever you do, and your plans will succeed. (Proverbs 16:3) My wife and I are leaning on this verse heavily as I enter my second month of orders negotiation. My detailer has already told me he wants me to "go to the school house" and either teach or lead a maintenance division. Now, anyone who knows me knows I would love instructor duty.There is, however, a problem. The base

Refusing Enzymes...

2009-12-25T23:39:00.000-08:00

Who would have thought it would happen on Christmas Day! I believe we saw today a new first for Samantha: She refused enzymes! I don't think that's really happened before. To be fair, she had been off all day, and remained that way until finally falling asleep. But that is only an underlying issue... It was at breakfast. We had just finished opening the gifts and I offered Sam her enzymes (she

Four Years

2009-12-22T07:23:00.000-08:00

Four years ago today we were sitting, worried and anxious, in the sub-specialty waiting room at Naval Medical Center San Diego. We didn't know exactly why we were there with our precious 2 week old daughter, but we knew it couldn't be good. Soon our fears were realized. Our daughter's newborn screening had come back positive for cystic fibrosis. -Our daughter's first Christmas present was a

Reconditioned Lungs for Transplant!

2009-12-17T06:23:00.000-08:00

Take a look at this news article, especially those of you who have had the second breath of life through lung transplants. I think this represents a future for us who deal with cystic fibrosis. I say "a" future because THE future for those of who who struggle with CF is found in a cure, but until that happens A future we can grasp is through reconditioned lungs. I didn't know that 4 our of 5

A Machine

2009-12-15T08:35:00.000-08:00

I got paid the greatest compliment a few days ago. It was the day after our local CFF Stair Climb and one of my team members wrote on my wife's wall (Facebook) that her husband (me) was a machine. You have no idea how awesome that felt. As we finish up another year and I get into fundraising for my upcoming half marathon, I have found something to strive for. Yes, of course, this is all about a

Exceptional Family Member Party

2009-12-13T23:16:00.000-08:00

I am so grateful to the folks at Lincoln Military Housing for hosting a Christmas party for those of us who are EFMP (Exceptional Family Member Program). The party was held at the Admiral Kidd Club on the Sub base on Point Loma in San Diego. They had a wonderful roast beef dinner, a candy bar for the kids, and Santa even made an appearance! The group also gave each child in attendance a

The best Thalassemia blog

2009-12-07T20:57:00.000-08:00

...is actually in Pakistan! I’ve been conducting a search lately to find the best blogs on autosomal recessive genetic diseases. Naturally, there are many good websites for all of these diseases. All one has to do is look at Wikipedia to find a clearinghouse of research/awareness websites. Blogging is a different animal though, and I’m still working on a comprehensive list of blogs for the

Asking repeat givers

2009-12-03T07:36:00.000-08:00

As you know, my family is involved in Great Strides each year. We have had a good amount of success for small-timers. However, I've reached a delima. As I prepare for the Carlsbad Half Marathon, I find myself wondering about asking people who donated to this year's Great Strides to donate to the upcoming half marathon. Now, I've only had this happen in one case. I'm doing my best to keep that

Don't Give up on God

2009-12-01T04:44:00.000-08:00

When bad things happen, some of us give up on God, or worse yet, get angry with him. If you have a faith (and I speak from the Christian faith), then you simply cannot give up when you hear that you have, or that your child has, cystic fibrosis. You may ask how we handled the news. Alicia and I had no idea what to think when Doctor W. told us that our daughter had cystic fibrosis. We didn't

Half Marathon Update

2009-11-30T06:04:00.000-08:00

First of all, I'm now a CF Strider! The change actually took place a few weeks ago, but I wasn't confident enough in the status to announce it. Turns out that there was a mix-up in the registration and I was registered twice. So the race folks fixed it and I'm good to go! Now I'm raising money for the CF Foundation! Results for the week: Miles: 12.3 Weight Lost: 2lbs Money Raised: 0 (with one

Gratitude

2009-11-26T06:24:00.000-08:00

I'm so grateful that Samantha is doing well and that she's in good health. I'm grateful that I have the best partner in the world (I love you Alicia) to help me and to lead the caregiving for our daughter and son. I'm thankful for a son who loves his sister and his parents. I'm thankful for a group of people on my ship and in our neighborhood who go, literally, the extra mile (or 4!) every year

Half-Marathon Update

2009-11-25T05:41:00.000-08:00

Injury: It started on my recent 10 day underway off the coast of San Diego. As with most places as fall settles in, the seas were choppy. Not bad, but choppy. I, in my gung-ho running state, decided to give it a go despite the conditions, so three times I jumped on the treadmill for a 3 mile run, only to be thwarted each time. Running while inside a steel (actually aluminum) superstructure is not

A New Acronym: ARDS

2009-11-24T06:24:00.000-08:00

I have written fairly extensively about diseases in the Autosomal Recessive Spectrum, of which cystic fibrosis is a member. I plan on continuing to write on occasion about the various problems encountered by those of us affected by the diseases contained in this spectrum because I believe we can learn from each other. Every one of the diseases has a small population base, which gives us yet

US Navy Flag Donation

2009-11-22T21:53:00.000-08:00

At the Well-Healed Gala this year, a flag was given away at auction and raised several thousand dollars. I was intrigued by that, and since I had a flag from deployment, we donated it to the local Cystic Fibrosis Foundation chapter here in San Diego for use in an upcoming event. Alicia and I purchased a fairly simple, but stylish display case (Pictured above) and delivered the flag and case to

Two Most important parts of the Cystic Fibrosis Foundation Website

2009-11-19T05:09:00.000-08:00

The CF Foundation’s website is chuck full of information, news, and assistance. However, for the CF newcomer, it might be just a tad overwhelming. There is a lot of information to get through because CF is a very complicated disease. However, there are two primary areas I would recommend when you’re starting out. The others can wait until your head has stopped spinning. Most important part 1:

Cystic Fibrosis Newcomer

2009-11-16T05:29:00.000-08:00

One of the changes I'm making to the blog over the next several weeks is to create a section, or label as it were, for the newcomer. I know that Alicia and I went on a feverish manhunt for information right after we found out we were CF parents. Well, I want to create a storehouse of information, inspiration, and advice for newcomers to the CF community here on Strides. My first post on that

Changes Coming to Strides Blog

2009-11-12T10:38:00.000-08:00

It’s not that I like change, mind you. I’m actually against it. However, I want to provide you, the reader, with more than just the happenings of the household. Beating cystic fibrosis is too important just to tell you that I ran “X” number of miles in a given week. Ending the threat of CF will require information, knowledge, and power. Offering the hope that is part of our motto requires that we

Lifesharing Fundraiser Training Results Wk 2

2009-11-09T09:47:00.000-08:00

Well, it's the end of week 2 for my half marathon training program. I took a mini-vacation last week, so it doesn't look too good, but I expect to be back on it this week. 1. Miles ran: 9.1 2. Weight lost: 0 pounds 3. Money raised: $0 Notes: I ran a 5K for time (not competition though) on Tuesday. My time was 29:17, so I now have a base to work from.

What is your Passion Level?

2009-11-02T06:00:00.000-08:00

Most Great Strides campaigns have long-since wrapped up for the greater Cystic Fibrosis community and with that, a lot of passion is being re-funneled back into the daily cycle of actually dealing with this disease. Once all of the fun is over, it's back to chest PT, countless enzymes, medicines, flu vaccinations, and the like. Kind of takes the fun out of the process, if you ask me! My passion

Lifesharing Fundraiser Training Results WK1

2009-11-01T21:47:00.000-08:00

This week marked the first week of training for the upcoming Carlsbad Half Marathon. I'm very excited to take part in the half marathon and I look forward to raising some money for another good cause that has helped some local CFers in San Diego. Of course, a person can't just decide to run 13.1 miles and survive. Lots of training goes into that. I'm reading about a lot of training programs now

Carlsbad Half Marathon!

2009-10-29T21:51:00.000-07:00

Team Sam just kicked into a different gear. I'm happy to announce that I am registered to run the half marathon in Carlsbad, California on January 24th, 2010! No, I have no idea what I'm doing! But I'm doing a lot of research to figure it out. But why in the world am I trying to accomplish a marathon? Good question! Here are some reasons: 1. It's time to give Samantha a good example for her

H1N1 and us! Good news!

2009-10-28T08:06:00.000-07:00

Timothy's temp finally came back down near normal this morning after being high Sunday and Monday (102.5+) and elevated yesterday (100-101). I think we're coming out of the fog now. He still has a fairly nasty cough, but hopefully he's on the mend. I don't know what they put in that Tamiflu, but it's good! Let's now hope that it continues to protect Samantha while her brother heals.

H1N1 and us!

2009-10-27T06:05:00.000-07:00

We're now waiting on my Congressman's office to get back to me on the specifics of our upcoming interview, assuming it can still happen, so stay tuned for that. Timothy developed a fever on Sunday while I was on duty, another reason I don't like being gone from the family. At any rate, the fever by Monday was hovering around 102-103. Alicia called Balboa Naval Hospital and after some discussion

Potential Interview with my Congressman!

2009-10-16T06:29:00.000-07:00

With the controversy swirling about health care reform, from both sides of the isle, I thought it might help my readers, and indeed anyone who is interested in this debate, if I could get some information "from the horse's mouth." That desire led me to write my Congressman for an interview. While the details are far from decided, it looks like an interview is at least possible! So here's what

Samantha and me at the San Diego Zoo

2009-10-13T05:12:00.000-07:00

If you ever get a chance to go to the San Diego Zoo, you need to go! I had Columbus Day off and since I get free admission to the San Diego Zoo for being military, I decided to take Samantha on a daddy-daughter excursion into the wild unknown! Well, ok, so it's a major zoo in the middle of a major city, but it was excursion enough for us! My relationship with Samantha is an odd one at best. I

Update on my Health

2009-10-10T15:59:00.000-07:00

I have two major praise notes to share with all of you. First of all, I'm home and not as sick as I've been in the last few days. Definitely no fever, and after a long nap to let my body rest, not as much coughing either. My throat is almost back to perfect condition as well! So I'm so grateful that I've experienced this return to moderate health. Secondly, and honestly most importantly,

Quarantined on a Ship?

2009-10-09T06:45:00.000-07:00

A funny thing happened to me this week...I got sick! I went underway on a training mission, and by day two I was feeling a sore throat and I had sinus pressure. No problem, right? By day three I was in my rack sick as a sea dog and not looking to get better. I was SIQ (Sick in Quarters) for the remainder of the day. Day four I was supposed to come home, so Alicia and I had a decision to make.

A War to Wage

2009-10-06T15:58:00.000-07:00

I know that this is something that most people don't write about, but I feel a little bit like picking a fight today, and the only things I can fight are CF and Ocular Hypertension...and the devil, who has given me quite a battle today. Almost slipped that one past you, huh? Last week I was diagnosed with ocular hypertension. If you aren't aware of the condition, it can lead to glaucoma, which

Best Fundraising Blogs

2009-09-29T05:49:00.000-07:00

I've been looking high and low. I've searched Google blogs and I've googled the term "fundraising advice". And most blogs and websites either want to sell me something or they give advice only at the foundational level. So my very simple request for you all is to help me build a blogroll of the best blogs to go to for fundraising. What I'd really like to see are blogs that help the individual

Cystic Fibrosis Gala--San Diego

2009-09-28T05:04:00.000-07:00

Alicia and I were graciously invited to attend the Cystic Fibrosis Foundation's Well-Healed Breath of Life Gala in La Jolla, California on Saturday. Though I started the process nervous and anxious enough to ask for help from our readers, I came away with a profound sense of awe and gratitude toward the organization and those who support us. The most humbling thing wasn't the amount of money

Need help Preparing for the Gala!

2009-09-23T04:06:00.000-07:00

As many of you know, I am a little nervous about the upcoming CFF San Diego's Well Healed Gala. It's the first time I've ever been to something of this magnitude, and honestly I'm just anxious. Instead of worrying about it, or dreading it, I want to have the right attitude, but I need your help. This is, after all, the first time I've ever shown up at something and been on an official guest

Poll Results...And New Poll!

2009-09-17T06:49:00.000-07:00

We closed out the poll right after the discussion on health care, but I wanted to wait a bit before writing about it because I wanted to be prepared to run another poll. 75% of respondants said that they favored a public option. I was a bit surprised by that number to be honest. 25% responded that they wanted something new, but not a public option. I gather two things. First, that the

Health Care Discussion

2009-09-10T05:13:00.000-07:00

President Obama spoke to Congress last night about his hopes for a Health Care overhaul. Since I receive my healthcare from the government (US Navy), I have been remiss to discuss it. However, I have considered lately the fact that my daughter will someday be outside of my health insurance umbrella. Depending on when she leaves the house, she will lose our coverage (through TRICARE) by the age of

Don't forget the Discussion on Health Care!

2009-09-09T21:43:00.001-07:00

We'll start our discussion first thing in the morning!

Great Strides Survey

2009-09-05T13:00:00.000-07:00

A couple days ago I received a request from the Cystic Fibrosis Foundation to take part in a survey regarding my Great Strides experience. The unfortunate thing is that I didn't really have a Great Strides experience! We never really got to do much as a team on the ship while we were on deployment, so Alicia will have to fill out the survey. But the email does serve as a nice reminder. If you

Upcoming Health Care Discussion!

2009-08-27T04:55:00.000-07:00

Next week we will finish the Summer Knowledge Project. Coinciding with that will be a discussion on the current American Health Care Debate. Now, since I don't want to politicize this blog more than I already have (through my advocate posts), I won't call this a debate. In fact, I hope it won't be a debate.What I would like to see next week is as many people as possible comment on what they would

Spinal Muscular Atrophy

2009-08-24T05:28:00.000-07:00

A few of the diseases in the Autosomal Recessive spectrum have really bothered me. Mostly this is because they significantly affect children and that hurts. Even with my faith in Christ, this is hard to swallow. From the SMA website:Spinal Muscular Atrophy kills more babies than any other genetic disease. There is no way that a person can read that and not be affected in some way, shape, or form.

Message from my Congressman

2009-08-21T23:06:00.000-07:00

I got an email from my congressman today, letting me know the status of the healthcare debate from his point of view. My congressman and I disagree on how to settle the matter, and I will write about it here in the near future...certainly by this September debate. In fact, once we're done with the Summer knowledge project, I'm going to host a debate on this blog, so be looking for it!Ok, enough

Autosomal Recessive Polycystic Kidney Disease

2009-08-17T08:26:00.000-07:00

One thing I’ve learned since starting the Summer Knowledge Project is that quite a few diseases exist that I have never heard of. It’s this ignorance on my part that I set out to reverse and I can now say that I’ve learned quite a bit about these diseases.Today’s topic, Autosomal Recessive Polycystic Kidney Disease, is one of those diseases. Until I researched this, I had no idea what to make of

VX-770

2009-08-11T05:28:00.000-07:00

It's time to start bringing the Summer Knowledge Project back towards Cystic Fibrosis. We aren't completely done exploring other diseases within the spectrum, but I'd like to do a post on a CF-related issue.Many people have heard about VX-770. It is the biggest chance right now, at least with those who have the G551D mutation and maybe others, to correct the problem that the mutated gene causes.

Don't Forget the Other Child!

2009-08-09T05:28:00.000-07:00

I'm grateful that our son, Timothy, has his own set of issues. Otherwise, we might think that CF is the only thing we have to worry about! Thankfully, “T” has a disorder called Sensory Processing Disorder, which means that his sensory input receptors can be easily overloaded. This leads to very bad outbursts, which can turn violent. Thanks to some great occupational therapy and some patient

GoldBamboo.com

2009-07-30T10:02:00.000-07:00

I stumbled onto the Gold Bamboo because I saw a link on my StatCounter, showing me that someone had come to this blog because of something on Gold Bamboo. I clicked the link, and sure enough, there was Strides To Cure Found! So cool, as a side note, to have that happen.Low and behold, I typed in a few other of our Summer Knowledge Project topics and they too came up! This has been so rewarding

Parade Magazine Article on Clinical Trials

2009-07-28T04:43:00.000-07:00

Most of us involved in the fight against cystic fibrosis know about clinical trials. Samantha hasn't taken part in any trials yet, and I don't expect we'll be interested in that for a few more years at least, but we of course know about them. I recently wrote my congressman about them, in fact, and you can read his reply here.You can imagine my distress then, as a father of a future-clinical

1000 Hits!

2009-07-22T13:13:00.000-07:00

I am so grateful for the readers who read and take part in this blog. You're all amazing. I'm so thankful for you. This is a great starting milestone, and I look forward to great things in the future!

Figuring it Out

2009-07-22T04:45:00.000-07:00

I'm finally getting it down! Yesterday I did a full breathing treatment and "love pats" for Samantha! And she didn't scream the entire time! Best yet, I did it the right way! I had messed up her chest PT a few times in a row in the last week, laying Sam down to do her upper lung PT (what was I thinking?). Anyway, we're doing better now and I'm not leaving my daughter wondering if her father was

Thalassemia

2009-07-20T05:00:00.000-07:00

Like Sickle Cell, Thalassemia also causes anemia. Unlike Sickle Cell, which is a problem of hemoglobin quality, Thalassemia is a problem of quantity. In short, there is an underproduction of a globin chain, resulting in the anemic condition. I know...that was alot for me to swallow too!Whereas Sickle Cell was found historically around on the African continent, the Indian Sub-continent, and parts

New Blog

2009-07-15T23:59:00.000-07:00

I know I promised a report on my voyages around Asia, but this just isn't the blog to write that on. To facilitate writing about that and other topics, I've started a new blog called Different Frequencies. There are a number of reasons for the new blog, but mostly I wanted a blog where I could write more from a personal standpoint and include more about my faith as a Christian. Feel free to take

Relearning Percussion Techniques

2009-07-13T09:50:00.000-07:00

I learned this week, my second week home from deployment, that it takes awhile to relearn everything. For example, I wanted to get back to doing Samantha's breathing treatments and started that process by watching Alicia give Samantha her breathing treatments and chest PT. I freely admit that I was a little fearful about jumping back into that role.Finally, one day, I decided to give it a try.

2009 Great Strides Wrap-up Party

2009-07-09T23:59:00.000-07:00

Tonight was the 2009 Great Strides Wrap-up Party and, because we are a busy family with many committments, Alicia and I had to split tasks to make it. We've gotten pretty good at it, if I may say so myself. Unfortunately, it usually means that one of us doesn't get to go to something. So Alicia whisked Timothy off to karate practice while I took Samantha to the Great Strides Wrap-up Party.During

Usher's Syndrome PT II

2009-07-07T23:51:00.000-07:00

As promised, I wanted to briefly look again at Usher's Syndrome before moving on to the next disease in the Autosomal Recessive Disease Spectrum. The reason I delayed moving on is that I felt I needed two posts for Usher's in order to break up the basic overview and the three different types of the syndrome.So, without further delay, here are the basics for each type, as well as the symptom:Type

I'm back home!

2009-07-04T22:29:00.000-07:00

I try not to make this a very personal blog, although that may be changing over time, but I thought I might take the opportunity to write about my deployment over the next few weeks. I want to share a little about each of the places I went and I thought that might be a good addition to the Summer Knowledge Project. Feel free to comment as you read over them. Ask questions too! And if it won't

Newest Letter from Congressman Hunter

2009-07-03T05:00:00.000-07:00

I just wrote my congressman (Duncan Hunter) about funding for SSI and received the following reply:June 29, 2009 Mr. S. Daniel Smith. Thank you for contacting me with your support for H.R. 2866, the Improving Access to Clinical Trials Act of 2009. It's good to hear from you.I feel strongly that our nation should continue the tough fight against diseases such as cystic fibrosis (CF). It

Usher's Syndrome PT I

2009-06-30T04:04:00.000-07:00

Like Alpers Syndrome, which I wrote about last week, Usher Syndrome has many components. In fact, there's a little vocabulary for those of you who are like me and didn't know what constituted a “syndrome”. A syndrome is a disease or disorder that has more than one symptom. I give full credit to this website for teaching me that fact. So we know, just by the name, that Usher Syndrome has many

Alpers Syndrome

2009-06-24T05:00:00.000-07:00

Alpers only happens, by estimate, in 1 of 250,000 live births, which I'm grateful for, but it is also a quick and heartless killer. Those affected will die usually before they turn the age of 10. Unlike cystic fibrosis, where researchers have developed a wide array of treatments, the only thing doctors and parents of an Alpers patient can do is treat the various symptoms, which include:-Seizures,

Sickle Cell PT II

2009-06-20T20:54:00.000-07:00

As I read through my post on Sickle Cell, I realized that it didn't really fulfill the intent of the Summer Knowledge Project...namely, to give the casual reader information about the disease. I gave some information on how it works genetically, but really, I need to follow up on it. Because of that, I submit to you Sickle Cell PT II:According to the US Department of Health and Human Services,

Sickle Cell Anemia

2009-06-18T05:00:00.001-07:00

When I was in middle school back in Kansas, I had a friend who had Sickle Cell Anemia. I never knew much about it back then and he moved shortly after our 7th grade year. We lost touch and so did I with the Sickle Cell trait. In fact, I to this day don't know anyone who has Sickle Cell. Yet I've become reintroduced to it through my research on Autosomal Recessive Diseases. So in memory of my

Tay-Sachs Disease

2009-06-15T05:00:00.000-07:00

Tay-Sachs Disease (TSD) is named for two different doctors. The first, Dr. Warren Tay, discovered a red dot on the eye of infected patients, which was the first time a way to diagnose the disease came about. Considering that this was in 1881, and blood tests were minimal at the time. Dr. Tay's discovery was vital to learning about what would eventually be named for him. Six years later, Dr.

Hawaii Great Strides

2009-06-12T05:00:00.000-07:00

I had hoped, at one point, to hold a sort of "mini-Great Strides" for the part of Team Sam that was on my deployment with me since we couldn't be in San Diego for the Great Strides there. Unfortunately, I couldn't quite get it put together, which is something I need to learn more about. Fortunately, I got to meet Russ and Sherry, and their wonderful little girl Rachel, who has cystic fibrosis on

The Role My Faith Plays

2009-06-10T05:00:00.000-07:00

When Alicia and I first started raising money for the Cystic Fibrosis Foundation (CFF), I was more than a little confused. Not at the process, for that is so easy! CFF has made everything very easy to get to, get involved with, and to be a part of. No, that wasn't the problem. The problem was that there was no Christian version of the CFF. Because Alicia and I support Christian missionaries

Autosomal Recessive Disease at a Glance

2009-06-08T05:00:00.000-07:00

Welcome to the first issue of our Summer Knowledge Project! Since I will be covering, for the most part, the Autosomal Recessive Diseases this summer, I thought I would start with an overview. Next week we'll start the actual disease series with Tay-Sachs. Recessive, in the case of genetic disorders, means that if a good gene exists, the good gene wins and the person does not have the disease. I

It bothers me more when I'm gone...

2009-06-07T23:38:00.000-07:00

I can't help it.When Samantha is sick, especially when it involves coughing, I get worried. Who of the parents (and maybe you adult CF'ers out there) doesn't get a little concerned when your child starts to cough?Try listening to it on the phone when you're roughly 5000 miles away.This isn't to get sympathy, I promise, but just let me be concerned for a few minutes and hurt a little for my

The Summer Knowledge Project

2009-06-04T05:03:00.000-07:00

Well, my wife and I recently celebrated the official close of our fundraising season (at least the official close of Team Sam's fundraising season). This doesn't mean that we're totally done, but as another blogger friend suggested, we are going to take a bit of a break. And because of that, I'm going to take a few posts to talk about some other subjects that are dear to me. Some of them might be

Post Success Question

2009-05-26T05:00:00.000-07:00

For all of you Great Striders out there, I hope your events are going well. San Diego's DeAnza Cove event, which Alicia and friends participated in, is now over and while it was a resounding success for Team Sam, I wonder if it's time to move on.So, having had a great year this year, what do you think we should do now? How long before we start working on next year? My concern is that we have a

Great Strides DeAnza Cove, San Diego

2009-05-16T05:00:00.000-07:00

As today is the day that our parent Great Strides is taking place, we on the ship wanted to wish our main Team Sam well on thier walk! So, from some of the sailors and officers who comprise Team Sam DE (Deployed Edition):Sam and Team,Have a great walk this weekend! I had an outstanding time last year and only wish that we could be home to participate this year. I'm very impressed with all that we

Changing Goals

2009-05-14T01:10:00.000-07:00

I value the wisdom of my fellow Great Strides fundraisers, and want your thoughts about changing the goal of your team after you've started. We conservatively estimated that we could raise $4500 this year due to my deployment and the economic situation in the states. Even though this is an increase over our total last year, we kept it low for the sake of not killing ourselves. But we've got a

Almost There

2009-05-07T05:00:00.000-07:00

Just a quick update about our fundraising efforts at the moment. Despite being deployed, with me on WestPac (what we call our deployments) and Alicia being sole provider for the two little ones, we've managed to get within $355 of our $4,500 goal!I am grateful and amazed that we've come so close, and that we still have a little time left. I've had a great team of fundraisers on the ship, with

Cystic Fibrosis Awareness Month

2009-05-04T05:00:00.000-07:00

It's that time of the year! Most CF Chapters in the USA will be conducting Great Strides this month, and San Diego is no exception. Of course it's perfect that it coincides with Cystic Fibrosis Awareness Month. So on March 16th, with me at sea somewhere, Alicia, our kids, and some of our loving friends will be taking part in Great Strides at DeAnza Cove in San Diego. I am sad that I won't be

Go with what you Know

2009-04-29T06:01:00.000-07:00

Hello everyone! It's been a long, long time. So it goes on deployment! I'm glad to get back to the computer to write, and I hope that I will be able to do it more regularly now.My title today might be better if it read: Go with WHO you know. I speak of raising corporate donations when fundraising. In a trying economy like our current one, I think this is even more true. Just like I'd buy a Pepsi

New discussion on Newsletters

2009-02-27T05:00:00.000-08:00

A little over a month ago I wrote about using newsletters to keep your donors informed. You can read that here if you didn't get it back in January. I have been reading up on blogging, fundraising, etc and came across a great post from The Fundraising Coach that discusses how powerful emailing is when done in short takes, vice using longer newsletters. I tend to agree with the fact that emails

AZZ Incorporated Donation

2009-02-25T09:32:00.000-08:00

Today we got confirmation that AZZ Incorporated, the parent company of my dad's workplace, and the company that my uncle works for in Fort Worth, TX, donated $1000 to our annual Great Strides Campaign! It's a blessing and an honor to be supported by such a strong organization. The donation from AZZ represents the largest contribution so far to our campaign. AZZ incorporated emphasizes the

Advocate: Senetor Feinstein's Response

2009-02-25T05:00:00.000-08:00

I just got an email from the office of Senator Diane Feinstein of California. That means that all three of my representatives have replied to me on my latest advocate campaign. It definitely feels like a success, and best of all, we were on the winning side! As you can see in the following: <>Dear Mr. Smith: Thank you for contacting me regarding health coverage for children. I appreciate the

Great Strides in 7th Fleet

2009-02-18T05:24:00.000-08:00

Well, it’s time to start planning our Great Strides for the Antietam. Granted, we have until May, but something inside of me is saying “Dude…it’s going to take awhile to figure this all out. You should start now.” So I’m starting to put ideas together. The fact is, we won’t be in a country the exact time the Great Strides event is going on for San Diego, which is what Alicia will be doing. And

Burial at Sea

2009-02-16T05:55:00.000-08:00

There is something about a burial at sea that makes a person a little more sober, the "I'm not going to be here forever" kind of sober. I had that moment today. We've done three burials at sea in the last 12 months on board my ship, and I'm pretty involved in the setup, layout, and photography for each one. They get me every time too.It's hard not to think of death when at a funeral, and when

Happy Valentine's Day

2009-02-14T05:00:00.000-08:00

Alicia, I love you with everything in me. I hope you have a great day!Dan

Advocate: Reply from Senator Boxer

2009-02-12T05:00:00.000-08:00

The following message is from Senator Boxer. I wish it was more detailed, as it doesn't even mention the reason I wrote her. I think it was for SCHIP, but it could have been for an NPR broadcast...I wrote her about both. At any rate, just getting the reply is yet again enough to keep moving forward in this area. Only one more issue to write to my representatives about and I fulfill my New Year's

Advocate: Reply from Congressman Duncan Hunter

2009-02-10T05:00:00.000-08:00

I am so grateful for the response from Congressman Hunter. I'm particularly pleased that he seemed to provide some sort of answer. This is the sort of thing that will encourage me to continue writing him regarding issues affecting those with cystic fibrosis.Now, I hesitate to discuss the contents of the message. I'm not trying to be a political blogger. It would seem that Mr. Hunter, just as

Back Online

2009-02-09T23:17:00.000-08:00

Well, I'm back online. Thank you for your patience as I get squared away with this deployment. As any of you with family or friends in the military can attest...sometimes we go offline for various reasons. I had hoped to blog more regularly, but such is life. It has been a humbling experience. For the longest time, I was always (more or less) able to email Alicia. For about a week, I couldn't

How to Recruit Team Members PT 2

2009-01-22T06:42:00.000-08:00

How do you follow up with people you have asked to join your fundraising team? Yesterday I wrote about one of the ways we recruit new team members, and to follow that up, I want write today about...well...following up. I asked a total of three individuals to join my team from my previous year's donor list. However, while one gladly accepted, two others have not done so as yet. So my question to

How to Recruit Team Members PT 1

2009-01-21T05:55:00.000-08:00

One of the things I did this year was expand the team of fundraisers on Team Sam in order to counteract the effects of the recession. This hopefully will pay even bigger dividends in the coming years as the economy brightens and people give more to our larger team.One of the ways I have hoped, and still do hope, to increase the number of teamates on Team Sam is to recruit people who gave larger