16th Race of 2013: Rock 'n' Roll Philadelphia Half Marathon

THIS POST IS DEDICATED TO MY CMTA FRIENDS IN LAS VEGAS, NASHVILLE, PHILADELPHIA/NJ/NY, TO THE ONLINE COMMUNITY OF CMTA AND TO ALL OF THE CMTA FRIENDS I HAVE YET TO MEET. I AM SO GRATEFUL TO KNOW YOU.

43rd event of our 24-month tour: Rock 'n Roll Philadelphia Half Marathon

Thursday, Sept. 12th:

Yet another 3:30am wake-up call to be at the airport by 4:30am. My flights were uneventful and Laurie Lasky, Allard rep for the Philly area, met me at the airport at 10:00am to begin a long day of appointments. What a treat to have airport transportation!

First stop of the day was an O&P facility in New Jersey called Pro Fit. This was one of the most unique operations I've had the opportunity to visit and I really enjoyed getting to meet the Pro Fit team:

Judging from the warm reception I received and by the smiles I saw on all the patients coming and going, this sign says it all.

Every room here was so different, this one houses a state-of-the-art ventilation system necessary for fabricating braces and prosthetics.

I commented that this reminded me of a disco dance floor, and immediately our host turned on the incredible sound system. These guys know how to keep their employees happy!

Looks like we have a lot of wallflowers in the disco room.
:-)

Out of respect for patient privacy I did not get photos of the reception area or the clinic rooms but I was able to take a shot of this FANTASTIC customer perk:

This room is in the back and is where Pro Fit customers can relax while a brace or prosthetic is being fabricated or tweaked for fitting. What a great idea! I'll have to tell my Orthotist that he needs to step up his game.

Thanks to the staff at Pro Fit for a great visit and tour, especially as they were extremely busy when we arrived. We had some great conversations about the Allard dynamic-response braces and discussed at length the need to customize each AFO (Ankle-Foot Orthosis... the technical name for my type of leg brace) with trimming or by adding wedges or inserts. Pro Fit offers a unique service in this capacity; they have the technology to make custom inserts (orthotics, not orthoses) from computer scans to take much of the guess work out of the equation. They gave me some literature on this process which I plan to discuss with Dr. Fields when I get the chance; he's the guy who makes my custom insert for running in the ToeOFF. Once Laurie finished the paperwork on an education course she's doing with Pro Fit we were on our way.

Next stop, Virtua Health and Wellness Center. On an earlier visit Laurie shared the TeamUP video with the Neurologist and his staff. When she told them I'd be in town this weekend running the Philly Half Marathon they had asked if we could stop by. It was great to meet this team, yet one more amazing group of professionals working every day to help others Get Back UP. I was not allowed to take photos inside the clinic area, just got these 2 shots:

Thanks, Virtua, for your hospitality and great energy! Now we're off to a Rehab facility back in Philly so we make our way out of NJ through traffic back over the river. We were visiting with Carol and Julie at Magee who graciously gave us part of their lunch hour for the visit... and given this, we brought freshly-made Dunkin Donuts for their team.

Upon entering the reception area you see this inspiration painted on the wall.  This facility was really hopping today but again, I was unable to get many photos because patients were doing Physical Therapy everywhere, including up and down the halls. 

I must say, each facility I visit can be so different from the others. This particular Rehab had such great energy to it, a lot of interaction was going on between the staff and the patients but also between the patients themselves. Among those I saw-- patients in wheelchairs, patients on crutches, amputees, and everything in between--you couldn't help but be inspired by the way they were all encouraging one another. 

... and perhaps the main reason for all the positive vibes was this dynamic duo! I so enjoyed speaking with Julie and Carol today. We're all runners so we talked a lot about that, which in turn caused them to ask questions about my experience running in the ToeOFF. This is where magic can really happen; runners know how the wrong shirt or socks can wreak havoc on a runner during a marathon and so they were interested in knowing how the ToeOFF worked so well without any "contact issues" like chafing or blistering.

Side note: I was pleasantly surprised to get a tap on the shoulder around mile 4 of the Half Marathon on Sunday. Out of the 22,000 runners in the crowd, Julie (above left) recognized me and made her way over to say hi. Thanks, Julie!

When we left Magee, Laurie and I made our way over to the Italian Market along 9th street for a much-needed meal. Both Laurie and I were up so early and it's now late afternoon and both of us were famished. I'll tell you, if you ever have the opportunity to travel with Laurie she's locked in to all the BEST local food places in the northeast. We had a great lunch but also a fun walk through all the specialty-shops and purveyors in the Italian Market. I think Laurie must come here a lot, even though she lives in NJ, because everyone was on a first-name-and-a-hug basis.

The menu at Anastasi Seafood Market. This place is unassuming in decor for diners and you're surrounded by displays of the day's fresh catch. Very authentic and very tasty!

A thin plexiglass half-wall separates diners from the fresh-catch cases. 

Fresh seafood chowder.

Caesar salad to go along with the Calamari we ordered (we scarfed it down before I was able to get the photo!)

Another display case beside the front register.

More photos:

From the Italian Market we made our way west to one of the  Lawall & Son O&P locations. We were hoping to catch one of Laurie's favorite practitioners but he was out of the office. She dropped off some requested information while I chatted with the team about the GBU mission and then we were quickly on our way.

My phone battery was dying so no more photos of the rest of the evening. Note to self: make a point of getting to a mobile phone store to get a new Mophie! That's really okay for now since we were wrapping up for the day anyway. Before taking me to my hotel to check in, Laurie took me on my hunt to find a balloon dog. My cousin, Sandy, requested one for her first Half Marathon when she read about the balloon pug I bought in Portland (details in the 2013 Portland blog post). Unable to find a dog, I did find a pony made by the same company--how serendipitous given that Sandy is a huge horse fanatic!

Back to the hotel for the evening where I got a quick bite at a kiosk outside my hotel and an early bedtime. It's been over a week since I'd gotten more than 6 hours of sleep and I was determined to get 8-10 tonight.

Friday, September 13th:

Friday the 13th--cool! Laurie is preparing for Yom Kippur with her family tomorrow so she left me to work in the hotel for the morning. Jim will be arriving by train from his business trip in NY and when he arrives we plan to check in at the Expo. I always seem to have so much to do and never seem to get caught up so I am actually relishing this opportunity to get something accomplished.

3 hours later and Jim shows up at the hotel--off to the Expo we go!

Jim arrived and so did our CMTA shirts!!

I guess I haven't mentioned yet about a great partnership we're promoting this weekend: Get Back UP Today teams UP with CMTA! (Charcot-Marie-Tooth Association) If you're new to this blog, please check out my Nashville 2013 post for more information about this important organization. Because so many people with CMT experience foot drop as one of their symptoms, the GBU mission pairs well with the mission of the CMTA. For months we've been working on a way to raise awareness for CMT and for people with mobility issues by pairing up; this weekend will be the first official attempt at doing so.

Two of the power-players within the CMTA (and 2 incredible women they are!) are Susan Rudiger and Jeana Sweeney. I met Susan by phone almost a year and a half ago then met her in person 11 months ago. I got to meet Jeana at a Las Vegas-based CMTA support group meeting last December and am so excited to see them both when they arrive in Philly tomorrow. Susan came up with the idea to have a CMTA team run Rock 'n' Roll Philly together with GetBackUP. We hope to start small and learn how best to move forward in the future and this just seemed like a perfect way to begin. Susan and Jeana recruited runners for the team and organized a group of supporters as well. Some of the runners and some of the supporters have CMT, while the rest of us love someone who has it. The runners were all given race shirts for the Half Marathon while the supporters will be decked out in CMTA t-shirts.

Wow, Jim finished in 2:03:58 apparently... and the race doesn't even start until tomorrow.

Finally!! A Merle-sighting, a sight for sore eyes indeed. Out of all the Rock 'n Roll gypsies, this is the one my cousin asked me about--she's been looking forward to owning her first Sweaty Band for her first Half Marathon. I've missed you, Merle!!! And by the way, nice guns!
:-)

Jim insisted that we didn't create a 'staircase' of heights like we usually do, this seemed to work fine, right?

Another favorite RnR gypsy, Dorcas with Women's Running. Great to see you, my friend!

What a surprise!! We ran into Denny Kelly (of our PR team, BKI) and although I get to see her often in Greensboro this is only the 2nd trip she's made to one of the RnR events in the last 19 months. She's here scouting for press opportunities and also getting the logistics straight for our tent in Charity Village at the race.

Another gypsy and friend, Kevin Gonzalez, just in from Florida.

Jim and I plan to come back to the Expo to meet Sandy and the CMTA folks tomorrow so today it was a quick visit with our friends here as well as getting our race gear picked up. Then, off to a late lunch in search of one of our favorite places from last year...

Home of the best vegan "hot wings" ever!! I've been craving them since last year so we popped in for a quick appetizer then headed back towards the hotel to drop off the race gear.

Cool sculptures w/in this urban oasis.

The walk back to the hotel was just about a mile. The weather this week has been perfect so far, just enough of a briskness to the air to hint at Fall without being too chilly out-and-about in shorts. Once we dropped our gear we set off for another favorite restaurant of mine, Hip City Veg, for a late lunch (or actually, early dinner by now).

I had one of these last year after my run and it was so yummy.

The interior of Hip City Veg.

My table mates. :-)

Vegan Crispy "Chicken" sandwich--my favorite on the entire menu!!!

...this will be devoured in short order.

Saturday, September 14th:

Another exciting day ahead! After a bit of work in the morning Jim and I head back to the Expo to meet Sandy and my Uncle Dan who are just arriving from DC.

Sandy loved her new pony and apparently, so did Merle.
:-)

Marathon Joe and Kevin sharing a laugh at the Expo.

David "The Clydesdale Runner" DeNeire on stage at the Expo being interviewed by John "The Penguin" Bingham. David stole the horse from Sandy for his interview.

Who thought balloons were for kids? Oh, and did you notice that the horse has foot drop? Luckily we know we can fix that!

My good friend George made the promo wall here.

Jim is a poster boy for Champion Systems running apparel in his CMTA shirt and Team UP jacket. Looking good!

Decisions, decisions. Sandy finally opted for a Sweaty Band to match her CMTA shirt. Unsure of how well she will run in her first Half Marathon, she wants to be sure to look her best at least. Good plan!
:-)

Sandy gets her first Terryberry/Rock 'n'Roll Marathon Jewelry charm to add to her Pandora bracelet. She wouldn't let Emily put it on the bracelet though until she officially crosses the finish line. Great to see you, Emily--wish I had more time to visit this trip but we'll have to plan for Cleveland instead. 

Uncle Dan, the Horse Whisperer... who knew?!

Once Sandy had the opportunity to shop the Expo we all found a quiet spot within the Convention Center to plan our strategy for race day. Uncle Dan and Sandy are staying in a hotel at Penn's Landing while Jim and I are in the Rittenhouse Square neighborhood in Philly. We made a plan for Dan to drive Sandy to our hotel at 6:15am where we would either ride in with Laurie or walk to the race start line. We also tried to discern from the course map if it would be possible for Dan to find us along the route. The Philadelphia RnR race is a fantastic course for the runners but because it goes out and back across the river it's not easy for spectators to view the runners in more than one location. After 30 minutes of planning we had a good strategy, and just as we were wrapping up I got a call from Susan--she had just arrived at the Expo. She stopped by to meet my family and to introduce 2 of the 30 or so folks from CMTA who are in town for the event. We took another 20 minutes to share strategies before going our separate ways; Sandy had friends she wanted to catch up with and Jim and I would be joining the CMTA group for dinner shortly. In the meantime we wanted to walk back to the hotel to change and I went in search of a new Mophie to make sure I have extended battery life on my phone for tomorrow's big event.

Never one to miss a photo op, I take on the Eagles before I tackle the RnR Philly Half Marathon tomorrow.

This photo is for my sister Maria. Maria, these are stockings that totally remind me of "running on dead bunnies"! I know, they're cats, but I think you'll see the resemblance. I miss you!
:-)

This one is for Dad and Suz... I miss you both so much, especially here in Philly where we had such a good time last year.

A quick stop at the mobile phone store for my new Mophie then to the hotel to change and get our race planning information then off to Devil's Alley for dinner with the CMTA crew. The restaurant staff was wonderful and the food was really good but dinner for 13+ people on a busy Saturday night was tough to pull off. We had a long narrow table and the restaurant was very noisy so it was difficult to talk to folks who weren't directly beside you. We still had a great time and I was so excited to get to meet more people in the CMTA. Thanks to Susan and Jeana for their excellent planning and organization!!

Half of our group (CMTA and BKI in this shot) enjoy each other's company while looking over the menu...

...while the other end of the table is deeply engrossed in last-minute planning for meeting up in the morning.

Wow, one of the sandwiches arrives but this photo hardly does it justice.

Here, Bob from Aetrex shoe company (sponsoring part of the CMTA events this weekend) tries to add perspective to how huge his burger is. Looks like this burger would break Jim's "Never eat anything bigger than your face" rule!

We leave Devil's Alley and our Aetrex, Bouvier Kelly Inc. and CMTA friends to rush back to the hotel. It will be an early morning tomorrow and with things still left to be done tonight we're already looking at a mere 5 hours of sleep.

Making my sign in the colors and spirit of the CMTA! Meanwhile, my new Mophie and my Garmin running watch are charging overnight and hopefully will be ready to roll in the morning.

Sunday, September 15th--RACE DAY!!

Sandy met us at our hotel promptly at 6:15 and we walked the 2 blocks to Laurie's hotel (she made it back to town late last night). We have a parking pass and Laurie has a lot of gear to haul for the race today so even though we could walk to the event we rode over with Laurie to make sure she was set.

As usual, even on a Sunday Laurie is taking business calls !

Jim is still asleep, I think, while Sandy flashes a nervous smile. Her first Half ever and she barely got any sleep last night in anticipation. But hey, she looks great!

Never too nervous to skip a healthy breakfast! Yogurt and a banana are her fuel for the race. I'm so proud of my cousin for going from total non-runner to a Half Marathoner in less than 6 months.

YAYYYYYYY! Finally Diane Beesley, who works at the Allard USA HQ in NJ, gets to come to a Get Back UP event!! Diane, YOU ROCK and I'm so glad I get to spend some time with you outside of meetings. Nice sign, too!!!

Everyone followed the plans we made last night perfectly; months of planning are coming together in inspiring fashion. Diane, left, Jen (running in honor of her good friend Kathy, who has CMT) and Denny Kelly of BKI are bonding in the first-ever CMTA/GetBackUPToday tent in Charity Village.

Jim helps haul the boxes of goodies from Laurie's car while Diane and Denny make plans for the day's event. I was running back and forth between our tent in Charity Village and the VIP tent where I had to check my race gear and make sure I had all our runners together. 

CMTA POWER! We are ready to rock 'n roll.

An absolutely perfect day for a run.

The Philadelphia Art Museum in the background. We will be running away from the museum and then using it as a beacon through our last miles running back towards it.

Jim, Sandy and Jen find the shade along the beautiful race course. We chose to run together to show our support and solidarity with the CMTA. 

The 10-mile marker in sight and Sandy is about to run in uncharted territory as 10 miles was her longest training run. She's feeling strong but definitely feeling the miles taking their toll.

Talking about how tough it was running here along mile 12, we remembered all of those people who would give anything to be out here with us today. We made a point to "Run for those who can't" and were immediately energized in our determination to not let anyone down. To all of you challenged with Charcot-Marie-Tooth, this is for you!

Uncle Dan has made his way all around the course today, running his own virtual half marathon it seems, to support his youngest daughter on her big day. Jim holds the sign while Dan gets photos of Sandy's last mile of the day.

She did it!!!! Way to go, Sandy, you were amazing today.

This is how it feels to cross the finish line after 13.1 miles.

And this is how it feels to sit down after 13.1 miles. 

A quick stop to visit with Emily again and to deliver the news that Sandy has officially added her RNR bling to her charm bracelet after a successful finish.

Part of the incredible CMTA team conquering today's course; whether walking, running or cheering, we are raising awareness in Philly and inspiring hope for a cure.

With less than an hour between the finish line and our celebratory lunch, I can't believe how great everyone looks. Denny, Diane and Laurie share a laugh and a sigh of relief for an incredibly successful event. Thank you to each of you for being so awesome to work with!!

DB (background) summed up the efforts of the CMTA in one word today: Supercalifragilisticexpialidocious!

Lunch on the rooftop terrace of Continental Cafe was a wonderful treat. I got to meet more of the CMTA-Philadelphia/NJ chapter and am overwhelmed by the grace and power of these families and their friends. If you have CMT or know someone who does and you are NOT taking advantage of the CMTA support community you are truly missing out.

Jeana chows down on the dessert tray... clearly, this was her inspiration for her 10K today!

And now... a BIG thank you to ALLARD, USA and to AETREX for sponsoring today's luncheon! Also a thank you to BKI (especially Denny and Lou) and to Diane and Laurie from Allard and Bob and Beth from Aetrex for giving so much of your time and energy to support the CMTA this weekend. This wouldn't have been the same without you. Finally, to Susan and Jeana and the entire CMTA community--this would never have been possible without you. I look forward to the next event and to continuing to do my part to raise awareness for the CMTA.

Monday, September 16th:

Yesterday was such an emotional day. I hope to get photos from Susan and Denny to post at a later time, they were able to capture so much more of the love and support exchanged throughout the weekend. As exhausting as these half-marathon weekends can be (between the running, the events and the outreach) I always feel reenergized by the incredible people I meet along this journey. I often feel like the luckiest person in the world, thanks to my spinal cord injury and subsequent foot drop, to be connected week after week with the very best people on the planet.

It's now Monday and I have another work day here in Philly before going home to NC for 1 day tomorrow then starting it all over again on Wednesday in Montreal. Laurie meets me at the hotel where we load up and check out then we're off to NJ to an MS Support Group.

We arrived at the meeting around 11:30 and hoped to be given at least 30 minutes to share our story. Laurie also wanted to discuss the bracing options Allard offers which can make amazing differences in the lives of those dealing with the symptoms of Multiple Sclerosis. By the time it was all said and done, we had a fabulous 1-and-a-half hours of conversation together. In respect for their privacy I did not take many photos but I wish I had more to show you. This support group, like so many others, was rich with love, education, understanding, hope and candor for each other. By the time I left I felt as though we were family and my jaw dropped more than once upon seeing Laurie's effect on the group. She doesn't try to push her product line at all, but instead invites an Orthotist to join her to answer questions about MS and all available bracing options but also to provide real examples of how the right brace can be life-changing. She brings enough samples for these people to try and you could hear the gasps in the room as the ToeOFF was tried on. One of the women did not want to give it back! Even after 12+ years in the US market, people don't know this brace exists... just another reason to keep on going with this mission of raising awareness. And even without proper fitting today, the brace allowed several of these women to walk without a cane--I never get tired of seeing this dramatic outcome...Great job, Laurie!

Laurie gets her projector set up and all the Allard goodies out.

Laurie speaks to a riveted crowd of about 20 people affected by MS. I was so impressed with her easy rapport, she truly comes across as a loving mom, not a salesperson, and you can tell this means so much to the group.

Whew. Just enough time to dry my eyes and take a few deep breaths as we say goodbye to our new friends in NJ. Now we're off again to Philadelphia for our last stop of our week together: a visit with Dr. Margo N Orlin, PT, PhD at Drexler University. Dr. Orlin has been doing studies involving running in children with Cerebral Palsy and I am excited to meet her. Apparently she has a tight schedule so we may only get about 15 minutes with her but she's asked to see my braces, both the Ypsilon and ToeOFF as well as the custom inserts I use.

We arrive on time despite the crazy traffic and find a parking spot right in front of the main entrance, what luck!

On our way to Dr. Orlin's office I see this poster on the wall. Since getting foot drop I am fascinated with gait-studies and other related research on biomechanics.

Wow, Dr. Orlin is a new favorite person of mine! She is so passionate about her research and work with children who have Cerebral Palsy. I took zero photos because we were so engaged in discussion about running, about the similarities of foot drop and the gait issues that CP can present, about the desire to keep everyone active--despite whatever mobility issue someone may have--and overall about our common mantras of falling and GETTING BACK UP. We were only supposed to have a few minutes of her time but we had a great hour or more together before we had to rush off to make my airplane departure. Before we left she gave me some further links to her research and also gave me the contact name and info for a colleague of hers she wants me to meet in Chapel Hill. Thank you so much for your time today, Dr. Orlin, and thank you for the important work you are  doing!

Here's a link to professional info about Dr. Orlin and I'm sure that you can google her name and find many of her published and on-going research projects:

http://www.drexel.edu/cnhp/faculty/profiles/OrlinMargo/

It was a mad dash to the airport but Laurie got me there just in the nick of time, whew! With only one day at home before leaving the country I could ill-afford to miss this last flight of the evening!

And once I rushed through security to my gate, I was granted the ultimate wish by the USAirways Upgrade Fairy--ENVOY SEAT in FIRST CLASS!! 

First time I've been on a 767 in an Envoy Seat!

Wow, good thing it comes with a manual.

Guess who's gonna be snoozing?!!!!

The seat itself was so comfortable I slept the entire flight and did not take advantage of any of the extra, amazing features. 

With all the other incredible events this week, I almost forgot that I ran a Half Marathon. Here's the bling to show for it!

And thanks to a 2-minute reunion with my good friend Geo, I scored my new favorite George-Bling. George, great job, I can't believe you have TWO pins now--you ROCK.