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Rebooting the Blog and Site

We are creeping up on two years since the last time I touched the blog and page I mashed together after Talen's diagnosis. I needed to take a step back and catch my breath. It just turned out that it took me two years to collect myself after the manic burst of activity when the doctors broke the news to us.

I am going to port over the old posts from the original blog, but I'm not going to put too much effort into cleaning up the formatting. I'd like to hold on to the thought behind some of those first few posts, but most of them feel like they're from another time. They might as well be from a different person. I was talking to Lisa the other day, about something unrelated to any of this, and she said, "Things changed after Talen got diagnosed." This change, it permeates, but it's difficult to quantify. A lot of the literature and support groups will trot out the familiar stages of grief to provide a framework for coping with a disease like Duchenne's Muscular Dystrophy. It comes close, but there's a piece of the experience that it fails to capture.

When you lose a friend or family member, they are gone forever. Deny, bargain, rage, or cry as much as you like, eventually you have to come to terms with that loss. THIS thing, though, it is something different. The wound never heals, and right when you think you are done with it, something rips the scab away and the process starts all over.

It isn't all bad, though. Like I said, when you lose a family member, they are gone. There ain't no coming back. This is the really real world. You know what I mean? Our little dude is still alive and kicking, and he might be a pain in the ass sometimes (like all kids) but I'm thankful that he's still with us.

All of this is to say, the experience has changed me. I can't say whether it's for better or worse, just that I'm different for it. When he was first diagnosed, I felt a compulsion to do something about it. It felt like I should be able to fix this. I haven't completely lost hope, but I am a little more cynical now than five years ago. I also realized that letting that hope run my life was turning to obsession, and the time I lose chasing phantom wetware projects and wading through PLoS articles was goe forever.

So all of this is to say that I have collected my thoughts, caught my breath, and I'm ready to make a second push. I am not certain what will come of the work I put in here, but even if it's just the therapy of going through the motions, I'm ok with it. People certainly have more useless hobbies than maintaining a blog about their family, genetics, rare diseases, or whatever this morphs into.

On the immediate roadmap for the site:

  • Port over the old blog posts
  • Review the old data gathered and decide whether or not to scrap it
  • Finish the script I started to scrape the clinical trials site - I'll probably get 75% done in python and start again in ruby - The preliminary work is done, just need to finish building the parser - There's an example posted here: https://talen-c.github.io/NCT00847379/

On the immediate roadmap for real life:

  • Finish cutting up that goddamn tree that fell in the front yard
  • Fix the pipe leaking under the house
  • Avoid the hospital
  • Go to Wrestlemania for Talen's Make-A-Wish (yay!)

Q&A with Toomee

Last year I asked Talen a bunch of questions and posted them up on the site (last year's Q&A here ). No real thought was put into the questions, just figured they might get funny answers. Tonight I asked him the same questions, and got some different responses.

[Link to the 2013 questions and answers](https://sites.google.com/a/toomee.org/toomee/about-talen/q-a/q-a2013)

Nothing else to add really. His answer to, "What makes you sad," gets a frown, but he doesn't skip a beat. Check it out if you have a few...

Talent for Talen, the Sequel

The follow up to last year's show was a few weeks ago at Tremont, and I wanted to break from the silence to mention how things went and thank a couple of people.

Event recap starts after the jump, but here's a link to the album from the event.

Talent for Talen - 2013

I got to Tremont just after 6PM to set up tables for the items that were donated to the event. We had artwork that was donated by Tim Swink, some jewelry and fashion that was donated by the Harpootlians, and gift certificates from Boudreaux's and Yoga One. It started to rain while I was unloading the truck, and by the time I finished it was pouring.

Meanwhile, the guys from The Jackknife Barbers and Dr. Cirkustein were unloading their equipment and carrying it backstage. Josh, the designated overseer from Tremont, introduced himself to me and let me know to talk to him if I needed anything. Dan, the drummer from The Jackknife Barbers, stopped me and asked what Talen's favorite instrument was. Years of fighting Talen for the drums on Rock Band made that an easy question to answer. Dan told me to get with him after the set and he'd let Talen beat on his Neil Pertesque drum set (it was seriously a lot of pieces), which I thought was pretty cool.

People started to trickle in before the doors opened (ok, so it was just family, but still...) which I thought was a good sign. Halfway through the Jackknife Barbers' set, though, I started to get a little worried about the low turnout. At last year's show, we probably had 150-200 people cycle through over the course of the evening. By the time the first band wrapped up, we might have seen 30 people come through the door.

Regardless of the turnout, the guys from The Jackknife Barbers played an awesome set. I should know by now, but a live recording on someone's Iphone that got posted to Youtube doesn't pay anyone justice. The band is three guys, a guitar, keyboards, and drums, but if you closed your eyes you'd swear there were seven guys on the stage.

Jackknife Barbers on Stage

After they wrapped up, Dan let Talen come up on stage and beat on his drums for a bit. It was the high point of the night for me, seeing how happy it made Talen to be up there. Dan played the crowd (can I still call it a crowd if it's only 20 people?) and got everybody cheering for Talen.

After that I relaxed a little about the turnout. Even if we didn't cover expenses it would have been worth it. You could see the bounce in Talen's step after he got off the stage.

Dr. Cirkustein came on and got their gear set up, and I stepped outside for a minute. I walked back in while they were tuning up to start and thought, "This is going to be interesting."

I might mess this up, but from memory there was a guy with a bear mask on keyboards, a guy with a plague doctor mask on bass, the devil was playing guitar, and a ringmaster with a kazoo. Hopefully I'm not pissing anyone off if I say I don't remember the drummer being in costume, but there was a lot to process visually and I didn't really get past the guys up front. The ringmaster gave a parental advisory before they started, I think out of concern for Izzy, Talen, Raven, and Keenan (who were barely paying attention at this point due to an ongoing game of tag). It was nice that he thought to put that out there, but once you've got your kids at Tremont after 10PM on a Saturday you're already out of the running for Parent of the Year, so I yelled for him to let it rip.

And rip he did...

In hindsight, maybe I should have taken that more seriously. For all I knew they could have planned a Gwar/Genitorturers type show, complete with elephant dildos and midget vivisection. It turned out ok, though. No permanent damage was done to the kids' emotional development.

Just like with The Jackknife Barbers, the stuff I heard prior to the show didn't really prepare me for Dr. Cirkustein's sound. If you took Operation Ivy, gave them more dynamic tempo, threw in a touch of creepy and mashed in a calliope and a kazoo, you'd probably still be off the mark but it's about as close as I can get.

After they wrapped up, satan hopped off the stage and for some reason the kids all gravitated right to him like he was some kind of demonic Mr. Rogers. Five minutes later he was laid out on the floor playing dead with the kids jumping on him. Every time he started to get up the kids would blast him with their imaginary guns and he'd flop back on the floor.

Hail Satan!

I was reminded of a conversation I had a while back with a really shitty neighbor. Someone in our neighborhood was painting their house, and they had a group of twenty or so people from their church helping out. The people next door had decided that they were going to convert their heathen neighbors and pointed it out to me as an example of how religious communities help each other out, implying that you couldn't get that kind of support outside of a church.

And here was the devil himself, laying on the floor in Tremont, playing with the kids after spending his Saturday night playing out to benefit complete strangers, and not expecting a thing in return. I can't help but think that people like my neighbors and others like them would look down their nose. We get the community support without dragging ourselves out of bed on Sunday mornings for our weekly dose of hellfire and shame. I wouldn't trade these folks for any amount of speaking in tongues or snake handling, though I do like grape juice.

Tough choice...

Izzy was starting to wear out and the other kids wanted to go home with her, so mom offered to drive them back to our house and let Lisa hang out until the end of the night. Dan (from Jackknife Barbers) caught us on the way out and asked if he had given us a copy of their cd. I told him that he had given Talen a copy earlier, and he said he wanted to get us two more so the girls didn't feel left out. Of course, we then had to unwrap all three copies while we were loading the kids in the van, and Raven wanted to fight with Talen to decide whose copy was going in the cd player. It was a good problem to have, though, since it just reinforced how much of an impact the show had on the kids.

The thin crowd had thinned out even more by the time FMB took the stage. They had shed a guitarist and added a vocalist since last year, and I was curious to hear how they had worked him in. When I first met Brett at one of their practices, I remember thinking, "Wow, so there's no way they are going to add a vocalist." The stuff I heard last year was mostly instrumental, and their average song length had to be 15 minutes. I'm not knocking it, keeping things tight for that long is an accomplishment (Insert joke about your mom here), especially at that tempo.

Their new stuff was shorter and sounded more like crossover thrash than their older stuff. I dig it though, no doubt. I caught myself starting to walk out a circle a few times, and lacking anyone nearby to shove I gave Lisa a couple of bumps to get it out of my system. I guess Pat (friend of mine) wanted to get in on the action because he came running across the room and knocked the piss out of me while I wasn't looking.

It's an easy compliment to say that they were technically sound, but to me it doesn't mean much if it doesn't spark some emotion. All the bands hit that spot at some point in the evening, but when the guys from FMB went full-aggro it felt like a punch in the gut. Not the "Pat-Just-Punched-Me-In-The_Gut" feeling, but the "I-Just-Heard-Minor-Threat-For-The-First-Time" feeling. Although, Pat did try to punch me a few times during the set. Unfortunately for Pat, I have the reflexes of a hybrid cat-ninja, and I was forced to destroy him. It was definitely the music and not a bruised spleen that I was experiencing.

Once the bands wrapped up, Josh (from Tremont) pulled Brett to the back to go over what they took in from the door. I have to be honest, I was a little concerned that we hadn't covered the house expenses, and I wasn't sure what that would mean. I told Lisa that if that was the case, we should tell Josh that we'd cover the deficit. I was worried about Brett not being able to book shows at Tremont in the future, but I was really concerned that him or one of the other guys would try to come out of pocket himself.

Brett came back out a little later and handed me $25. He said we netted $5, but Josh threw in $20 of his own money to bump the take up some. Once we added in the $80 from the raffle and auction (plus a couple of checks that Lisa's friend Alissa produced from some of her friends), we probably brought in enough to cover Talen's deflazacort prescription for the next couple of months.

In truth, if Brett had handed me $2000 at the end of the night, it still wouldn't have been the most valuable thing we came home with. I don't know if there's anything I could do myself that would make Talen feel as important as the knowledge that there is a concert just for him. For weeks leading up to the show, we fielded a constant barrage of questions from Talen about it, and the effect that it had on him after was plain to see. He has a tough road ahead of him, and if the concert did nothing more than increase his happiness it would be worth millions to me.

So here is the list of people I wanted to say thanks to:

Brett Butler - Of course. None of this would have happened without this guy. Dan (from TJB) and Satan (from Cirkustein) The rest of the guys from FMB, The Jackknife Barbers, and Dr. Cirkustein Josh and Lisa from Tremont Shannon Daggett (because this never would have happened without you) Tim Swink, Jon, and Penny for the donation to the auction Boudreaux's and Yoga One for the gift certificate raffle Alissa (and her friends) for their donations All our friends and family for making it out The raffle prize winners (in case anyone was wondering) were Joe Prater (won dinner for two at Boudreaux's) and Patrick Dugan (won a month of yoga at Yoga One). Kristi, Jake, Pete, and Mindy purchased some of the art that was up for auction, and when everything is said and done we raised enough money to cover Talen's Deflazacort prescription for a couple of months, with a little bit left over.

Prosensa Webinar

Prosensa Webinar Parent Project MD (www.parentprojectmd.org) organized a webinar with Dr. Campion from Prosensa to discuss their exon skipping compounds. I wanted to post some notes to the blog, but had to split my attention a bit so it's not exhaustive. If I'm being honest, it's probably nonsensical, but here it is anyway.

Dr. Campion introduced Prosensa and discussed their background in RNA modulation and their focus on developing novel treatments for DMD. Prosensa evolved from research performed at Leiden University in the Netherlands. Dr. Campion discussed the partnership with Glaxo-Smith Kline and how the licensing of their IP has enabled Prosensa to achieve the results they have experienced.

2013 marked the first positive placebo controlled clinical trial for exon skipping treatment. GSK achieved breakthrough designation as a result.

Prosensa has a molecule in "late clinical phase" for exon 55 (targeted at Talen's mutation), as well as a molecule for exon 52 and four molecules currently in clinical trials. No new info here.

There was a period of discussion about locations of trials and biomarkers that are used for proving success. I wasn't paying a lot of attention here, but the summary is that there are three centers in the US and plans to expand.

PRO044 - Phase 1 completed in Europe. Extension study to begin in Europe EOY2013, US EOY 2014.

There was more discussion about the design of the clinical trials, which essentially covered the process for starting and expanding the trial, dose escalation, etc. There was some indication that the trials are intended to keep the children on the drug long term, possibly to provide the drug until it arrives on market. It was mostly boring regulatory talk, though. The biggest point made was that regulatory agencies are receptive to accelerating approvals for future molecules based on the success of drisapersen (pro051).

I stopped paying attention for a minute, but I was pulled back in when I heard the discussion turning towards multi-exon skipping. It seems like they've been doing some research on masking 10-18 and 10-30. Not mentioned here, but there is research being done higher in the gene which might produce something beneficial for Talen, but this is significant for a lot of kids who aren't being targeted due to more rare mutations. No estimate to trial was provided though.

Dr. Campion discussed issues with proteinurea (blood in urine) that has received some coverage. The drug distributes to the kidneys and concentrates in proximal tubules. The side effect was mild and reversible, and from personal experience it is something that occurs in boys with DMD. This was reinforced by the fact that children on placebo also experienced it.

The drug is administered through subcutaneous injection, which might make home administration possible.

Slide on AON development:

The rest of the info was all boring information about how awesome Prosensa and GSK are.

Q&A

Info on timelines requested Something about pro044. Pro045 is in a dose ranging study, hopeful for 2014 in US. 52/55, hopeful for late 2014 or 2015. :|

Followup question about exon 53 About to enter clinical trial

I quit paying attention again after hearing about PRO055 getting pushed out to 2014/2015.

Overall, not really worth the time. Not a whole lot of encouraging news about exon 55 skipping.

Disney Trip Days 6-8

Disney Trip - Days 6 - 8 (Plus All the Pics) I just spent a little bit of time organizing all of the remaining pictures from the trip so I could post links for anyone interested. I'll stick the links in the next post. There are some videos mixed into the albums. I didn't get a chance to delete the blurry pictures and accidental videos yet, so don't get mad if you have to wade through a dozen or so short videos of someone's feet.

I'm starting to get trip report fatigue, and I'm guessing no one will be let down if I summarize the last couple of days into a single post. So, here is a pictorial "executive overview" of the last few days.

Day 6 - Animal Kingdom

As promised, there were animals there.

Talen thought the 'Expedition to Everest' yeti memorabilia was awesome, but freaked out when we had to get on the ride because he thought there was a real yeti.

Dinner was another buffet. The kids took all of these from the dessert bar. Every last one.

Talen had to make room for more.

Pretty girls

Cutest kids in the park.

Went to downtown Disney after Animal Kingdom closed. Met up with Todd and Suzette there.

Days 6 and 7 - Magic Kingdom

Punk in Park Zoo's

Breakfast at Chef Mickey's

Making mom sick on the teacups is a Campbell family tradition. This is the before picture.

During

And after...

Raven didn't like the flying carpets

She wasn't happy about Dumbo either

Talen loved Big Thunder Mountain though.

Merida from Brave

Disney is hard work

Raven makes friends everywhere, even on the bus at midnight

Trip Home

We stopped at Jekyll Island in Georgia. Talen put a dead crab in Raven's hair. She was not happy.

Disney Trip Day 5

Disney Trip - Day 5 Wow, two months since the last post. Work has been insane, and I've been spending a lot of my free time working on the house. Honestly, by the time I sit down I'm usually beat.

I decided to skip posting most of the pictures in-line with the post. It takes way too long, and I'm having trouble keeping up with posting new entries as it is (evidenced by the lack of posts since April). It might be because I uploaded the pictures to my other google account, and the big G seems to have trouble swapping accounts in certain applications (blogger and picasa are two I've noticed), so the whole process becomes much more onerous. I will post the links to albums once I've finished the trip notes.

Anyway, here's the skinny on day 5 of our trip to Disney (Epcot).

Epcot, for me, was kind of like Thundercats. What I remembered from going there as a kid seemed a lot more awesome than it was as an adult. There were also significantly fewer asian tourists than I remembered when I was a kid. At Epcot, that is, not on Thundercats. The Thundercats were mostly some indeterminate European ethnicity, except Panthro of course.

We actually went during a food and wine festival that is held every year at Epcot, so there was a lot of fat, drunk people staggering around. It wasn't like a scene from Bourbon Street or anything, but there was definitely a higher ratio of adults to kids than any of the other parks. We ran into Sleeping Beauty shortly after we entered the park. She was ok, I guess.

After, I dragged everyone to the Captain Eo movie. Isobel is a huge Michael Jackson fan, and I didn't tell her that he was in the movie so she was not impressed at first. She got excited when Michael Jackson pranced across the screen and was all,"HEE HEE." I remember going to see it shortly after its release when I was a kid, so it was fun sharing that experience with the kids. We wandered around for a while before lunch. There was a large atrium near the front of the park that had several places to eat, so I started steering the family that way. Talen was not into stopping for food, though, and started having a meltdown, so I had to convince him that we were going to get on a ride.

"This isn't a ride!" Talen yelled when we got to the front of the atrium.

"Yes it is." I replied.

"What's it called?"

"Talen's Butt."

He wasn't sure if I was serious, so he asked Lisa who confirmed that the ride was indeed called Talen's Butt. It made for a funny scene when he realized we weren't going on a ride and started yelling, "I don't want to eat in Talen's Butt!"

I can't remember the name of the place we ate, so it's going to be referred to as Talen's Butt from here on.

After lunch we hopped on a boat ride, inside Talen's Butt (getting a lot of mileage out of that joke), that was intended to educate riders about the evolution of agriculture in the United States. I found it interesting. The kids definitely weren't digging it. The ride went through areas that the parks used to produce food (vegetables and fish) for the restaurants in the park. They had aquaponic tanks set up to route fish waste through gravel media to grow lettuce and other leafy greens. There was a walking tour that we could sign up for after the boat ride ended, but despite whining for a half hour, the kids wouldn't let me go.

We made our way through the rest of the park. Other than the kids running into Chip and Dale and Lisa threatening to destroy some rude Mediterranean tourists, it was kind of meh. We did go on a scavenger hunt through the foreign countries, which seemed like fun until we realized the other 300 people doing the same thing were ruining the surprise by lining up at the things we were supposed to find.

I thought dinner would be exciting. I had reserved a seat in the Coral Reef, which is beneath the big aquarium at Epcot. The food was really just kind of ok, though, and the kids were grouchy, so it was not the best time. I had heard the food at Epcot was "the bomb" so it turned out to be a disappointment, but maybe we just picked the wrong restaurant. Had I known better, we might have just banked some money to eat at the food and wine festival, but hindsight...

That wrapped up our Epcot visit. We left the park after closing time, and all of the drunks had vacated leaving scattered Disney staff floating around like ghosts to clean debris of various types. Hopped on the bus back to the room and crashed into bed.

Disney Trip Day 4

Disney Trip - Day 4 Here's the next Disney post, maybe 15 minutes after the last post. How is that for content generation?

Day 4, well, day 3 really, we had reservations at the SciFi Diner at MGM, so our destination was set when we dragged ourselves out of bed. After yet another late night spent playing games in the arcade, we once again got a late start that morning. I believe we finally got our gear together and made it to the bus stop around 10AM. The whole way through the resort we were stuffing snacks into all available facial cavities with Lisa grumbling that she would really like to eat a real breakfast for once.

The bus picked us up at the terminal and we walked through the gates at MGM somewhere around 10:30AM.

This family is a big bunch of nerds (pay close attention and you'll notice Talen is dressed as Indiana Jones), so right through the gates we hooked a left and made a beeline for the Star Tours ride. We knew we were getting close when we saw the AT-AT peeking over the top of an ewok village. The line was fairly short, so we ran past the jedi training platform and made our way beneath the ewok village, past an x-wing and various robots, to the staging area for the ride.

Lisa gets car sick. She also doesn't do well on motion-simulated rides.

It was really too bad she got nauseous. The rest of us wanted to go back and ride again a few more times. Well, ok, Talen, Izzy, and I wanted to ride again. I think Raven isn't as into Star Wars as she should be.

After the ride we had to walk through the Star Wars gift shop. It was only through sheer willpower that we made it through with our wallets intact. It's tough being a parent sometimes. My kids pick up a custom built light saber and say, "I want this," and the first thing I want to say is, "Me too!"

Outside, the kids waited in line to have their picture taken on the speeder bike outside of the shop. There was a moment of crisis when Izzy got on the speeder first, and Talen approached full meltdown status for a few seconds. The park employee taking pictures at the ride offered to let Talen hold her lightsaber if he would cool it, and a lightsaber makes everything better.

Lisa saw a sign outside of the ride for "Jedi Training." A group of kids were already on the platform receiving tutelage from a Jedi master, and we were all in.

"It says sign ups are in the studio," Lisa said. "We should go ahead and sign up."

I waved two fingers in an arc. "It's not even noon yet, we have plenty of time. Let's go to the Indiana Jones ride instead."

Lisa laughed and told me that my jedi mind tricks wouldn't work on her. Then she bit the head off of a frog-looking thing and dropped me in a rancor pit. So we went and signed up right away, over my protestations. When the guy signing kids up told us that the only openings were in the last two groups of the day, Lisa gave me the look of triumph. I let her enjoy it, because I am, in fact, very rarely wrong. More importantly, she saved me from being forced to explain why we couldn't go to Jedi training.

We made our way around the rest of the park. The kids all enjoyed the Indiana Jones and Muppets shows. After we left the muppets show, Lisa saw a huge kermit statue and wanted me to take their picture in front of it. Everyone climbed up and got ready to take a picture, and right before I hit the button a park employee started yelling for them to get down. So we got an awesome picture with the family looking pissed in front of kermit.

We hit all of the other rides except the Toy Story ride (they ran out of fast passes and it had a 2 hour wait) and the Aerosmith roller coaster (because Aerosmith sucks and the little ones couldn't ride). On our way around the park I had been talking about how awesome the Tower of Terror was, and by the time we completed our circuit the kids were all hyped.

"Is it like the drop zone?" Lisa asked.

"Not exactly," I said.

"Does it just drop, or does it drop a little bit, then stop, then drop the rest of the way?" Lisa asked.

"I can't remember," I lied.

Raven was a little scared going through the line. Talen did not give a single fuck, though.Check out his picture (below, right). Does he look scared? He was too busy making fun of Raven to be scared. One word about the Haunted Mansion and he would lose it, but he was ready to hop right on this ride.

I suppose it's a creepy scene for a five year old, but I grew up watching shows like Twilight Zone, Outer Limits, and Amazing Stories so I have some bias. Lisa picked up Raven and we rolled up to the elevator car. After a bit more reassurance, and a dark trip through the hotel, the doors opened and the elevator car began dropping, shooting back up, then dropping again.

After Lisa stopped yelling at me, we stopped at the booth where they show your picture on the ride. Talen was laughing. Izzy was gripping her seat. Lisa was crying, and Raven was hiding her face in Lisa's lap.

I heard about it for the rest of the trip, but it was worth it.

After a few more rides, Lisa took the kids to the studio so they could get ready for the Jedi training and sent me to get a spot for pictures. I'm telling you, people are very serious about taking pictures of their kids doing stuff. We were about 20 minutes before the start of the show, and people were already there setting up their tripods and steadicams. I picked a spot close to the stage and spent the next 20 minutes fighting off intruders.

The show was one of the high points of the trip. In a nutshell, the Jedi master gives the kids some lightsaber training, which they use to fight Darth Vader when he shows up to lure them to the dark side. If I'm being honest, part of me was hoping that one of my kids would hear me yelling, "If you only knew the power of the dark side," and attack the Jedi master. I'm sure they have some contingency plan for it, which may just be pulling the kids aside before and telling them that joining the dark side warrants a lifetime ban from Disney, but it still would have been funny.

After, we grabbed dinner at the sci-fi diner, which was probably one of my favorite meals while we were at the park. Lisa was twisted when we didn't get to sit in one of the cars, but the food was pretty good and the waitress was super nice. By the time we finished, the park was closing, so we made our way back to our room for the night.

PS, here's a couple more pictures that I couldn't possibly have crammed into the margins without making this post even more of a mess:

MDA 5K Run

MDA 5K Run I got this in my inbox from Lucas Coe, who is one of the coordinators for the MDA in the Charlotte area:

Hello there!

I wanted to share a great opportunity with you. One of our Camp Counselors from last year’s Summer Camp was so touched by what MDA does that she has started a 5K to raise money for MDA. If you are like me, you probably don’t run yourself, but know people who do, so I wanted to send this along so you can share with any friends you have who are runners. If you have any questions, please let me know!

From the Camp Counselor, Lisa:

After volunteering at MDA summer camp, I really wanted to find a way to raise money and help more. The campers are so awesome and, as a Winthrop cross country and track athlete, the best way I could think of was to have a 5K fundraiser titled "Run For Those Who Can't." This race will be held on April 27th. Check in starts at 8am and the race will take off at 9. It will start from the Winthrop coliseum, in Rock Hill, SC, loop around a lake, and will finish on Winthrop's mondo track. Just like camp this year, there's a superhero theme for whoever wants to dress up! The last day to sign up with the lower pricing and get a t-shirt is April 13th. It should be really fun, and of course, is a great cause. You can sign up through the PayPal link at the event page: https://www.facebook.com/events/419556831433530/

Lucas Coe Lucas S. Coe Health Care Services Coordinator The Muscular Dystrophy Association 1515 Mockingbird Lane # 701 Charlotte, NC 28209

Lucas has been a lot of help over the past year, and we didn't make it to the MDA Muscle Walk in March, so I figured the least we could do was pass the word along. Lisa has been wanting to run in a 5K (she's talking about doing some zombie run), so maybe if a few other people are interested I can get her to sign up also...

Disney Trip Day 3

Disney Trip - Day 3 Day 3 of our trip was actually our second day at Disney World in Orlando. We had made a number of reservations at restaurants way ahead of time, so our itinerary was defined in terms of which parks we would be going to. We hopped out of bed a little late due to our late stay at the Magic Kingdom the day prior, shoved some snacks in our faces, and rushed out to the bus stop to head back to Magic Kingdom.

If I haven't already said it, staying at the Disney resort was nice. There was no worry about driving, parking, or loading and unloading the van. We had a couple of terminals to wait at depending on which park you were destined for, and buses came around on a mostly regular schedule.

By the time we got back to the park it was creeping up on lunch time, so we stopped at a baseball themed hot dog joint to get some food. We had worked our way from Adventure Land through the park clockwise the night before, so we decided to start in Tomorrow Land and work counter clockwise this day.

All of the kids were big enough to get on Space Mountain (though the little ones just barely made it), so we got fast passes and went to some of the other rides in the area with shorter waits. We got on a Lilo and Stitch ride that simulates the alien's escape from captivity. Each of the seats has speakers, hydraulics, and some kind of vent that blasts you with the most awful stench. The intent is to make your seat bounce to make you feel like the alien is jumping on your seat, and replicate the alien burping in your face by pumping something that smelled like hot, rancid onions in your face. Raven was terrified and the smell made my stomach turn, so we moved on to the Monsters Inc. show across the way before heading to Space Mountain.

The kids liked Space Mountain, but I think it scared Raven and Talen a little. We left there and got in line for the Speedway. Talen almost had a melt down when he found out he wouldn't be able to drive his own car without parental supervision, but we convinced him that he could work the steering wheel while I worked the gas pedal. There was still some contention about exactly who was supposed to be working the pedal once the car left the station, but he and I sorted the details out pretty quickly once he realized he couldn't really reach the pedal.

The next ride we would come to was the Mad Hatter's tea cups. I had pretty fond memories of seeing mom turn green on that ride. I shared that story with the kids and they all informed Lisa that their intent was to see her puke. So they ran from the Speedway to the tea cups, which we could just make out from the track's exit.

Unfortunately, the tea cups were under maintenance. A couple of employees had some panels lifted and were scratching their heads while looking at some mechanism that was probably important. The kids were bummed, but we saw that Tigger and Pooh were getting ready to greet kids so we moved to the pooh ride and got in line.

There we had the first of a couple of run in's with some of the park's European guests. I've always heard how poorly Americans are perceived in other parts of the world for being boorish and rude, but I can't imagine how it could be worse than the Southern European/Mediterranean tourists at Disney. One guy in line wanted to get "THE PERFECT SHOT" of his kids standing with Pooh and Tigger, so he was pushing, climbing on, and leaning over anyone between him and what he thought would be the ideal angle. At one point he knocked Talen down, and then swung a camera that must have weighed 20 pounds around and smacked Talen in the head while he was getting up.

Lisa started yelling at the guy, who gave her a momentary blank stare before resuming his attempt to balance on top of a metal rail while taking a picture at a precise 37 degree angle. Lisa looked at me and motioned at the guy as if to say, "Do something!" I checked on Talen, who was crying a little from the bump, and told him to stick close to me. I looked and Lisa and shrugged, not out of some lack of concern (because my blood was boiling), but just to say, "What can I do?" My decision matrix only seemed to have three options:

Get in the guy's face and cuss him until he was forced to apologize (Not likely) Hit the guy, or take his camera and then hit the guy with his own camera (Quick way to end the vacation) Swallow it for now and make sure he doesn't do it again I chose the third option. Lisa chose the first. The results were pretty much the same.

Everything settled down eventually, Talen shoook it off, and the family took pictures with Pooh and Tigger. We skipped the Winnie the Pooh ride for the time being and decided to go back through some of the rides we rode the prior evening before dinner. During that window the kids went through some pirate training with Jack Sparrow.

Our dinner reservation was at a buffet restaurant called The Crystal Palace. The food was maybe a little better than the Golden Corral, but the characters from Winnie the Pooh made their way around the tables to greet the kids while we ate. Periodically, music would start playing on the overhead speakers and the characters would lead all of the kids around the restaurant in a game of follow the leader.

After dinner we snuck in a few more rides before the park closed. We hopped on the bus back to our resort and went to the arcade there for a while. I guess the staff periodically flips a switch in the arcade to make all of the games free to play, because we played games for about 45 minutes without spending a dime. A few hours later we all hiked back to our room to get some sleep before our visit to MGM studios the next day.

Disney Trip Days 1 and 2

Disney Trip - Days 1 and 2 I thought it might be worthwhile to put up some of the highlights from our Disney trip. After the initial shock of Talen's diagnosis settled in and we had time to absorb what it meant, we started to worry about things that we had assumed could be postponed until we were in better financial shape. The fear we had was that, by the time we were able to do some of these things, the disease would have progressed to a point where it might be difficult, if not impossible, for Talen to enjoy it.

Fortunately, we had a lot of people around us who stepped in and made a trip to Disneyworld happen a lot quicker than we could have ever managed on our own. I feel like the list of people we have to thank for this trip would warrant a post of its own, but at a minimum I think I should acknowledge the help we got from Jon Harpootlian, Shannon Daggett, Brett Butler, and all the folks from the Crown Point bus stop.

So here are the first couple of days...

We scheduled our vacation from October 26th to November 2nd, so we had a full week to spend at Disney in Orlando. We purchased 5 day base tickets and room at the Port Orleans Riverside resort, which had two queen beds and a smaller hideaway bed, so we could sleep 5 people. Luckily, during the time we went there was a promotion that included a meal plan, and since we were staying at a "moderate" resort, we were able to use some of our meal credits at the nicer sit-down restaurants.

Rather than cramming a full 10+ hour drive into a single trip, we decided to stop somewhere in Georgia and stay overnight. So on Thursday (Oct. 25th), Lisa and I packed the car while the kids were in school. Once they got home, we pulled one of the seats out of the minivan to make room for half of our earthly posessions, and then we hit the road.

I had my work Ipad, which I loaded up with movies for the trip, and I bought a mounting bracket for the van headrest so we could use it as a portable media device to keep the kids entertained. I bought the cheapest wireless headphones I could find, and the kids seemed to enjoy the trip for the most part despite some initial technical issues with the headphones.

We made pretty good time that first day, stopping in Brunswick, GA somewhere around 11PM. Finding a hotel room that night was a little tricky, though. Sprint's network was spotty in some of the less populated areas, so I spent a good 30 minutes driving around looking for a signal so I could figure out where we would spend the night. Lisa has an aversion to seedy hotels, and I didn't want to spend a ton of money on a room that we would only be sleeping in for 8 hours. We ultimately compromised on a clean, inexpensive hotel near the interstate. The area looked a little spotty, but we didn't get robbed and our stuff was still in the car the next day so I guess it turned out ok.

Hurricane Sandy had been heading towards Florida, but took a turn to the north sometime around the 26th of October, so we had a lot of menacing clouds overhead on the second leg of our trip. We never got more than a few brief showers, but it looked like we were in for a drenching when we finally reached Orlando. Fortunately, everything had cleared up for the most part by the time we pulled into the Walt Disney compound.

We walked up to the front desk right around check in and got the low-down from a very nervous attendant with a "In Training" name tag. His designated overseer was looming over his shoulder while he gave us our passes and explained the meal plans and other amenities. I stopped at the concierge desk to make sure our reservations were squared away and we went to our rooms to unwind for a bit before the "Not So Scary Halloween" event at 7PM.

The room was small for 5 people, but we figured it wasn't a huge deal since we wouldn't be spending much time in our room. We did notice within 15 minutes that every available surface (floors, tables, beds, chairs, and countertops) had been covered with something from home. We unpacked a few things and watched tv for a bit before grabbing dinner at the resort's quick service cafeteria. The food there was decent, not awesome, but even if we hadn't been eating for free I would have said it was worth the price they were charging. It was mostly standard American food, pizzas, burgers, sandwiches, pizza, pasta, and salads. We found out that every adult dinner came with dessert (but not the kids), so we were pretty full when we hopped on the bus to head to Magic Kingdom.

I don't think we got any good pictures of the park the first night we were there, but it was kind of cool how they had it decked out for Halloween. Cinderella's castle was illuminated in green lights and the staff were almost entirely dressed in costume.

We walked into the entrance of the park right as everyone was getting situated for the parade. After being reprimanded by the staff for standing in the wrong place, we found an open spot and squeezed in right by the street. The parade was Halloween themed (of course) and the kids seemed to have fun watching all of the characters going by on their floats. A lot of the characters in the parade actually walked up and interacted with the crowd, and one of the characters shouted to Talen, "What time is it?"

Talen just stared. I told him he was supposed to say, "Adventure time!" He promised to do better next time.

Isobel was so stoked to get the Disney characters' autographs in her book that she ran up to a guy dressed as Jack Skellington from Nightmare Before Christmas and asked him for his signature. He told her that he didn't work at the park, and she was momentarily crushed. As we were walking away, several other groups of people asked him the same thing, though, so it wasn't too awful bad.

We went straight to Adventure Land from there, and got on Pirates of the Caribbean with no wait. As we were leaving the end of the ride, fireworks were going off over the castle.

We made our way around through Frontier Land. It was a little chilly, so I refused to ride Splash Mountain, but we did get on the Big Thunder Mountain Railroad pretty quickly. At various locations, the park had employees giving candy out to trick or treaters, so we stopped a few times to let the kids do some trick or treating.

In Liberty Square, Izzy and Raven were coaxed into riding the Haunted Mansion with me. Talen flat refused to entertain the idea. If we tried to cajole him at all he would start screaming, "You're forcing me to go on it! Stop forcing me!" Lisa decided to sit out with him (because I'll be damned, I was going).

Everything was cool until we got into the ride and scary stuff started to happen. After the room descended and the scary voice gave you the narration for the ride, Raven decided she wanted to go sit with Lisa and Talen. I lied and told her there were no exits from where we were, so the only way out was forward. She calmed down after a few minutes, and by the time we got into the car she was fine.

On the back side of the park, we got on It's a Small World. The kids all agreed that it was kind of fun, but that they weren't really interested in ever riding it again. We waited about 30 minutes to get on the Peter Pan ride, which I believe was the longest wait we had that night.

Towards the end of the night we found ourselves in a new section of the park. I believe it was called Fantasy Land. We rode a Little Mermaid themed ride that was pretty much the same "Sit in a Car and Look at Talking Robots" formula that a lot of the rides follow. After we exited the Little Mermaid ride it was getting close to closing time for the park, so we started to make our way back.

We probably left the park at 11PM that night. We brought strollers for the little ones, but even so the walking wore them out. The bus ride back to the resort was silent. After getting lost in the resort, we found our way back to the room and got some sleep so we could head back to Magic Kingdom in the morning.

Once I upload the remaining pictures, I'll post them to the main site's photo albums (link). You should be able to click on any of the pictures above to see larger versions, though.