Sunday, November 27, 2011

Why I'm Thankful

I spent this Thanksgiving realizing what I’m truly thankful for in life.  Life has thrown a lot of curveballs lately.  Though this blog is, and always will be, about running and raising money for National Psoriasis Foundation, there are a few life updates you need to understand at the moment. 

The short story is that life has gotten crazier every time I expected it to calm down.  Some were personal choices, some were unexpected traveling, and then – well, the rest.  Renovations at my current apartment building caused them to try to kick us out in less than a month (which, by the way, is illegal), and after many difficult conversations led to us moving out in about two weeks with some concessions.  If you’ve ever dealt with the Arlington rental market, you know it’s not the easiest.  I’m glad to say that despite the stress and tears, we now have a beautiful apartment – much nicer than our old one – and are happily settled. 

Just as we got settled, I was enjoying our beautiful new kitchen and tripped into the cabinet.  It wasn’t the hardest fall, but apparently enough to cause a concussion.  However, since it wasn’t that bad, it went undiagnosed in the beginning.  Being totally confused and unable to think clearly is a terrifying feeling and I must admit I was pretty scared, which just made it worse.  As things continued to get bad, I ended up going home early for Thanksgiving to be with my parents where I felt safe that they could care for me and get me to the best doctors.  My mom, even though she felt terrible herself, was in the car within thirty minutes ready to head to Arlington to bring me home.  She and my dad took turns taking care of me, driving me to doctors appointments, getting a CAT scan, etc.  Though you can’t officially diagnose a concussion, my symptoms all make sense and the tests have ruled out anything worse. 

I’m slowly getting better – I’m confused less often, less dizzy, and the “fog” in my head is going away for more hours of each day.  Even though it was a scary experience, it made me realize how thankful I am for a wonderful family.  My parents dropped everything and made sure I was OK.  Adam was and still is being absolutely supportive and kind as I recover.  Yes, it took me a few tries writing this because I can’t stare at a computer screen.  Yes, it means I will miss my final, awesome race in Las Vegas next week.  But at the same time, it made me realize how lucky I am.  As a 25 year-old, you start to get this crazy feeling that you can do it on your own.  You’re paying your own bills, living your own life, ready for anything.  But the second you’re terrified, there is nothing you want more than a hug from your parents to remind you that you’re safe and everything will be fine. 

Thank you all for understanding why our “grand finale” race won’t happen next week.  We’re still deciding if the rest of the family will go (someone would stay on the east coast to be near me – just in case).  That said, even though this blog is slightly behind, the Challenge will be a success!  I always had a weird feeling that something might happen (I thought injury, not concussion), so I planned 13 races for the year.  That means that I have now finished 11 half marathons and one full marathon, actually exceeding the goal for the year!  What a wonderful experience this has been and how lucky I feel to have been part of it.  More updates and thoughts to follow as I feel better, but thank you to everyone!

Monday, October 17, 2011

DC Walk to Cure Psoriasis

My parents came into town for the event!
It was finally here.  The DC Walk to Cure Psoriasis.  Technically, the event we have been fundraising for all year (though in reality, the event has stretched way beyond that, which is great!)  This was the time I would get to see the people I had met earlier at National Volunteer Leadership Conference, and remember why I’m running these races.  It was awesome!
 The event was on a Sunday, and I’d done a complicated series of races the day before  (I ran a 5K at 8:20 AM, then ran 1.4 miles uphill, and then ran a 10K at 9 AM).  But I made sure I wasn’t too tired on Sunday because I would be running a 5k to kick off the ceremony for the walk.   
 Dad came by after our races the day before
I was lucky to be joined by my dad and sister for the run so it was even better!  Though we may not have done exactly the 5k route because of some navigating issues (seriously, don’t ever listen to my directions), we did a similar route and headed back to cheers and posters from the crowd.  
Running in to kick off the stage presentation
I need to mention one group in particular here – the Alpha Phi Omega chapter.  When I arrived (before registration had even opened), they were smiling and working hard to set up the event.  When I got back from my run, they had these signs they had made to cheer me on!  Their energy was contagious, and I can’t thank them enough for what they did.
The signs and the Alpha Phi Omega team.  Thank you so much for your support!
 Then we got to the stage presentation.  Linda, who you’ve read about before quite a few times, was there leading the event.  As always, she did a wonderful job.  She is enthusiastic and it’s obvious how much she cares about helping people (as does everyone at NPF).  The organization realizes what a personal journey this is and goes above and beyond to take care of the emotional AND physical needs associated with psoriatic arthritis and psoriasis.  
Dan Farrington, the Chair of the NPF Board of Trustees even came to the event.  Great to see him again!
Julie Donaldson from SportsNet was the emcee, and it was great to have her out there with us.  We heard speeches from people who live with the disease daily.  Amy and Diane did a great job conveying the challenges but also sharing hope.  I think this was a great way for my mom to meet some other people who faced the same challenges she does regularly, and I highly encourage others who may be faced with psoriasis (or any disease really) to meet some people in their community who may be having a similar experience.  It’s very reassuring and helpful to know you’re not in it alone.
Julie Donaldson from SportsNet with Amy and Diane
 We heard from Caitlyn and Amanda, the two youth ambassadors from the walk, and from others.  
Caitlyn and Amanda, the youth ambassadors
There were awards for teams with the most people there (congrats to the American soccer team that won this), and I was presented with a generous gift card. 
 The American women's soccer team.  Look how many showed up!
I can’t wait to try Vespucci restaurant and am so appreciative of the generous gift card and your kind words.  Eventually, it was time to kick off the walk!
Thank you for my gift card to Vespucci.  Can't wait to try it!
Though we kicked off the walk, my family stayed back since my mom can’t walk that far.  We were able to see the teams returning and talk to them before heading out.  
 And the walk begins!
Thank you to everyone who made this event possible, especially Linda.  Her hard work for months leading up to this was pretty evident.  Awesome way to celebrate the year!

Thursday, September 29, 2011

Rock n Roll Philly

I literally found myself smiling randomly in the middle of this race.  I had been planning to run this race for a long time – Rock n Roll races are fun, it was flat, and I have wanted to go to Philly.  But with a few weeks to go, Adam made the leap and registered as well.  When I started the Challenge, he was barely running at all.  In June, he ran the Dash4Dad four miler which was a really long race for him.  And now, just a few months later, he was tackling a half marathon!
 Carb loading the night before
The weekend started out great.  We headed to Philly Saturday morning (though slightly later than planned – my fault) and checked into our hotel (thank you Marriott points and Adam’s regular work trips for that one!)  The view from our room was gorgeous. His parents and sister were already there, so we headed out and had lunch in this crazy market full of restaurants.  Afterward, we went to meet up with one of his friends from college who is now at UPenn.  Adam’s dad went there for graduate school, so we got to see his old townhouse and hear stories from his parents when they were there.
We tried to go to dinner at a local Italian place but the wait was almost an hour and a half, so we had to pass on that.  Eat pasta, get all the race gear ready, early bedtime, go!
Race morning was here!  Relatively speaking, it was a late day (wakeup at 5:30 AM) because 1) it was only a mile walk from our hotel to the start, which prevented the need to account for traffic and 2) the race wasn’t until 8.  Woohoo!
Adam and I headed to the start with plans to see his parents and Rachel around mile 2 and 3 since the hotel was on the course.  It was actually pretty chilly (around 54 at the start i think) but made for great racing weather once you got moving.  The morning was very smooth and well run and we were off!
I had agreed to pace Adam for the race.  This is scary to me because we all know I’ve messed up my own pace pretty bad a few times, and it was even worse because my Garmin did not work at ALL the first two miles (unless we really did run 4:30 min/mile!)  I heard others had the same problem which might be from the tall buildings in the city.  Luckily, we were able to hit within about 10 seconds of our target (8:45 min/mile) anyway for all miles.
 It's hard to see, but that guy is juggling!  I saw him in Virginia Beach too, quite impressive!
Adam’s race plan was simple: start at 8:45 pace, take walk breaks at the water stops around miles 4 and 8, and slow down as needed.  The goal was to break 2 hours.
Well, we got going, and he never slowed down!  His leg was hurting but he did SO well!  There is nothing more exciting to me than sharing someone’s first half marathon.  If you’re thinking of running one but don’t want to do it alone, let me know!!!  Crossing that finish is truly incredible.  You suddenly realize you did something very difficult and you rocked! 
We did it!
The first few miles were in the city and had lots of spectators, which I love.  Then it moved into a park setting which was very beautiful and scenic but lacked fans.  Overall, a pleasant course, though the water stops were a little chaotic.  
Before I knew it, we were done!  Though I never pushed him to run (OK, maybe to run one race, but a short one) I saw his mileage increasing and I knew he was capable of running a half.  This race was especially significant because Adam's whole family came to Philly to cheer us on.  They were awesome spectators, and I know it meant a lot to both Adam and me to have them there to share the weekend and his first race.  We are so lucky to have such great friends and family!
 Thanks for cheering us on, Udasins!
I’m thrilled to say that race #10 is successfully in the books.  One step closer to the finish line!

Thursday, September 8, 2011

Rock n Roll Virginia Beach and a big announcement!

The whole crew!  So much fun...
Have you ever had a moment where you watch something, and you half dream of doing it one day, but it seems so far from achievable that you shake the idea?  As I said earlier, that's how Rock n Roll Virginia Beach was for me.  Watching my dad run it eight years ago and handing water to the elite athletes - it was so thrilling. I was a runner, and a pretty solid runner at that, but a half marathon?  Even in my longest workouts, I only ran 40 or 50 minutes back then.
New shorts: easy to find in a crowd and unique
So heading into Virginia Beach was like picking up a lifelong dream.  In some ways, running ANY half marathon filled that, but it felt so special to be a part of this race.  Even better, it meant heading home for the weekend and sharing the experience with my family.  Adam and I went home Friday night after work, so it was pretty late by the time we arrived.  Saturday we went to the expo to get my number, enjoyed the gorgeous Virginia Beach weather, and basically took it easy with my parents.  Kristen and her husband got home late on Saturday (OK, relatively speaking it was early, but it seemed late since bedtime was before 9).
They woke up very early to join me at the start.  Thanks!
We woke up at 4:30, and Adam and my dad went over to the start of the race with me.  The plan was for Curtis, Kristen, and my mom to join us for the end of the race.  The starting line was busy but great!  My dad commented that I didn't seem nervous at all, and I really wasn't.  It was a little surprising to me since I hadn't raced in so long but being back out on the half marathon course felt so natural that I was just glad to be there, no matter what happened.  As per usual, I was in Corral 4.
How is it that I end up in Corral 4 about half the time?!
The gun went off and I felt great.  About a mile in I was pretty absorbed in my music, but I still somehow managed to hear my name!  Kristen, Curtis and my mom had made it in time to cheer me on, and only one mile in!  I was ecstatic.  Not that running isn't fun without others but it's such a great boost to hear people cheering for you.  I saw them again around mile 2, and then a few blocks later saw Adam and my dad.  As if I wasn't excited enough for this race, I was just loving it at this point.
All the really good runners
Not too much else to say other than it was a lot of fun.  A very flat course other than going over a bridge twice, but even that wasn't too bad.  There were lots of entertaining cheerleaders and bands and fans out cheering the runners along, so the miles went by easily (and a little kid was handing out lei's with about two miles to go, so of course I grabbed one).  Somewhere around 10.5, I started to struggle a littlle bit, but then at 12 I decided to go for it.  According to my watch, I actually did mile 12-13 at 7:30 per mile pace, which is great!  Near the end, you reach the boardwalk and naturally start to speed up as you see the finish line and hear fans cheering like crazy.  But I looked at my watch and realized that I was still deceptively far from the finish.  That might have been the toughest part - so close you can see it but still having almost a mile to go.  I heard my cheer squad near the end (over an already loud crowd - they were that good!) and pushed it to the finish, with an official time of 1:45:23.  Second best time to date and more importantly a solid, confidence building race. 
 On the boardwalk and SO close
Why do I need confidence, you ask?  Here's the big news: I'm training for a marathon.  I currently have a Marine Corps Marathon registration for October 30.  Though I've had it since February, MCM has a flexible transfer policy so my goal was to see how I felt and decide if I'd run later in the year.  So far, I've built my training runs up to 18 miles and logged 94 miles last month, my best month to date.  Not to jinx it, but I'm feeling good!  I've chosen to keep this quiet because I don't want any pressure to complete the marathon if I'm not up for it - though I'm definitely sticking with the Challenge!  If there's one thing I've learned from my mom's psoriatic arthritis, it's to take care of yourself, and I'm not going to run the race if I'm not feeling totally ready for it.  I'm a little nervous how I will get in my weekend long runs with two half marathons between now and then but I'm still hoping to be able to walk to the starting line on Oct 30.  Crazy, huh???  I guess 12 half marathons just wasn't enough!
I think I was in the middle of waving in this picture.  Or my form is just terrible.
Now that I've announced that, back to the race.  I spent some time with my cheer squad but mom wasn't feeling great, so we headed out relatively quickly.  I could have stayed and spent the whole day just being with the people I loved and knowing that we were making a difference for NPF.  I went home and biked along with Adam as he did his long run of over 11.5 miles, his longest run to date.  Why?  Because he registered for his first half marathon in two weeks in Philly, which will be even better because his family will be out there to cheer us on.  Does it get any better?
Feeling great
I am happy.  I'm happy to be back to running but more importantly I'm happy to share this with my family.  Though I hate that I only see my parents every month or two, it makes the time much more precious.  Now on to getting ready for Philly.  Let's go!

As always, this one's for you, Mom.
Very fun medal to go with a very fun race

Wednesday, August 17, 2011

Ready to race!

I miss racing.  SO much.  A year ago, I couldn't have dreamed of completing a half marathon and now I feel empty after just a few months off.  The great news is that I'm less than three weeks away from my next half in Virginia Beach!  I've been looking forward to this race for a long time.  My dad ran it while I was in high school (before he had knee surgery that stopped him from running long distances) and I had the chance to volunteer at the finish line.  Handing out bottles of water to these great athletes was so inspiring, but I couldn't imagine being able to run a half marathon then (even though I was running cross country!)  Now I'm racing and feeling better than I've felt in years, if not ever. 

I have had a lot of exciting news lately, but let me start with this: we have raised over $14,500!!  I just can't even begin to tell you how happy this makes me.  I have the best team and friends that anyone could ask for.  And it's not just the donations.  The number of people who have shared the blog link, or voted for me in various competitions, or just asked about the Challenge all the time have made this such a great experience.  I'm truly at a loss for words to describe how appreciative I am for everyone who has donated and supported us. 

This year has been a tough time for my mom and she has tackled it like a champ.  I couldn't be more proud of her or have a better role model.  I pass along all comments, all donations, all good news to her and I know how much it lifts her spirits.  The battle is much less difficult when you have a team of people supporting you the whole way.  So thank you to everyone who has made this possible and here's to the next few months of finishing strong!!!

Sunday, July 10, 2011

Summer adventures

Since I'm taking a break from racing for awhile, I thought I'd write an update on running and what has been going on with the Challenge lately.  First off, I just got back from a great five day vacation in Outer Banks with my family and Adam.  We had a wonderful time and relaxed at the beach, ate way too much great food, and just spent time together.  Mom is still not feeling her best but was a great sport despite how she felt. 

Sure, there were beers on the beach and more food than I should admit to, but there were some healthy aspects to the trip as well.  For one, I ate much more fruit than usual because it was always cut and ready in the fridge, so I'll try to have fruit available more often at home.  It was interesting to me that an almost daily part of my relaxing lifestyle was working out.  Adam and I went on a 15 mile bike ride, I got in a few runs despite the heat, and I even spent some time swimming laps in the pool (first time in years!).  I realize that I actually enjoy working out and living an active lifestyle - when I have time.  Because life gets busy, working out is often one of the first things to suffer.  With the Challenge, I've thought of running as a second job of sorts, and it's been great to give it a higher priority on a regular basis.  I'll try to keep this mentality even when the Challenge is done.

Overall though, my runs haven't been great lately.  I was planning to take some time off after my 8th race but ended up running sooner than I planned.  The runs I have done have been very difficult for me.  I think that because of the heat, I just haven't been able to run nearly as far as I'd like. 

So today I pulled out my gym membership and spent some time bonding with the treadmill.  I got in a 14 mile run (longest ever, excluding the Alexandria half marathon mishap - but I walked most of the end of that).  It was great to know that I could still do it!  Looking forward to running more and maybe even adventuring into some other workout forms.  Swimming was pleasant and a friend just told me there's a pool at the high school less than half a mile from my apartment which you can pay to use, so I may try that.  I've also toyed with biking to work for awhile (about 7-8 miles each way) and may see if that works out as well.  Just loving all the new adventures!

Sunday, June 26, 2011

Dash4Dad 4 Miler

No, I haven’t made it the 11, 12, 4 Challenge, but last weekend I took on the Dash4Dad 4miler.  There were a few reasons for doing this race.  The primary reason is that someone I care a lot about was recently diagnosed with prostate cancer, and I wanted to show him how much I care.  Secondly, I miss racing.  I thought I’d enjoy having the summer off, but now I dread this much time without a half.  Lastly, Adam has decided to tackle a 10K as his Challenge for this year, and his training is going very well.  The 4 miler seemed like the perfect chance to do a practice race before his 10K, so I was lucky enough to convince him to join in.  
 Adam getting pumped up before the race
Since it was Father’s Day, Adam’s parents and sister came to visit and cheered us on for the race.  It was a really touching experience.  Congressman Jim Moran, whose office I met with during Capitol Hill Day, gave a speech about how widespread prostate cancer is, but he also said how easy it is to treat if found early.  Approx 1 in 6 men will be diagnosed with prostate cancer during their life – but as I said, most will go on to live long happy lives if we can catch it early.  Such hopeful and promising news.
  Congressman Moran crossing the finish.  Way to go!
The race was great.  About 1,400 people registered (I think 900 something completed it).  The course started on a pretty steep uphill, but on the good side, it ended on a pretty enjoyable downhill.  At mile 1, you could tie a tie and then wear it for the rest of the race, and if you did this you got a coffee mug.  Of course, I’m up for any chance to make races fun, so I loved this idea.  And the coffee mugs are great!  
 I love these mugs.  I gave my dad the "Go ask your mother mug" this weekend and he loved it!  So funny.
Adam and I decided to run together no matter what, but once again, my running buddy wowed me.  He ended up finishing the race in 8:14 per mile (they subtracted out the tie-tying time) which is unbelievable.  He’s been joining in for the first few miles of a lot of my runs, and I was so proud of him for his effort in this race.  For someone who claims he isn’t a runner (even for someone who says they are a runner), that’s quite an accomplishment! Go Adam!

I think he was on a runner’s high, because I found him searching the internet for 10Ks just a few hours later.  I’m telling you, if you want to run, register for your first race.  That will be all you need to get yourself training, and once you’ve done one, its addicting.

Thanks Udasins for cheering us on!  And Adam, great job!
We spent the rest of the weekend enjoying the time with Adam’s family and eating lots of great food.  Though of course I missed my own dad on father’s day, I knew I would see him the next weekend when I went home to celebrate my mom and my sister’s birthday, so it wasn’t too tough.  And the time I got to spend with Adam’s family was so relaxing and enjoyable.   Thanks for making it such a fun weekend!
Every runner got a post race drink.  We picked Mimosas.  Yum!

Thursday, June 23, 2011

Happy Birthday Kristen!

Today is Kristen's birthday.  So first off, happy birthday Kristen!  Second, I want to take a second to thank her for all that she does to keep this Challenge going.  Though this blog is really my pet project (at least so far - who knows when I'll start bringing in some guest blog posts), a lot of other aspects of the Challenge are thanks to Kristen.  She keeps the Facebook page up and running and she often tweets about what's going on.  She designs big cards and business cards and gets them all ready to go for my events.  She helps keep me on top of things when I start to get overwhelmed by the races and 

Since many of you hear all of my thoughts on the blog, I thought this would be a good time to say just how much she does to make this Challenge a success.  When I started this Challenge, I had it all wrong.  I thought running 12 half marathons would be a huge challenge.  Nope, that's the easy part.  Keeping up with all the emails and conversations, getting materials ready so that we can spread the word, planning races, acknowledging and thanking our wonderful donors, trying to find new donors and sponsors - that stuff is really challenging.  And Kristen has gone above and beyond to help with all of that.  I wouldn't trade this experience for the world, but I don't know how much I could have accomplished without such great support.  Kristen has been integral to the success of this project, and I think our donation page proves how much we have accomplished in such a short time. 

I simply couldn't do it without you Kristen.  Happy birthday!

Sunday, June 19, 2011

Climb the Hill for a Cure - Capitol Hill Day 2011

Tuesday rolled around, and I was ready for Capitol Hill Day.  The day started early since the buses were leaving at 7:45 to head to the Hill.  Team Virginia was off  to our first meeting right away.  Basically the plan was for each person to have three meetings – both of your state Senators and then your local Congressman.  

I know, typical tourist picture.  Even though I live here.
We started by meeting with Senator Webb’s counsel who was very nice and listened to what we had to say.  Since there were 8 people from Virginia, there were plenty of people to talk and share our story – if anything, the hard part was all feeling as though we’d said what we wanted. 
All of these assistants hear about health related issues all of the time.  Our goal was to tell what we go through on a daily basis or how it impacts our life and why it is a serious disease, not just itchy skin.  We shared stories of people who weren’t allowed into pools by lifeguards because the lifeguard couldn’t understand that the disease wasn’t contagious.  We heard stories of bullying, of tough decisions about choosing to have children.   I honestly had no idea what so many people went through, especially those who were diagnosed at a young age.  Ignorance is not bliss, and people who choose not to hear what others are going through and empathize can be cruel.  The good news is many people have found treatments that work, but often at high costs (both in dollars and side effects).  With continued research, let’s hope for better options.  
Virginia group!  They were such great people and made it a fun day.  Hope to see them all the walk in September!
We then headed over to meet with Senator Warner’s Legislative Assistant (LA). 
At this point, you are probably asking – what were you requesting? 
1.     Co-sponsor H.R. 2033/S. 1107, the Psoriasis and Psoriatic Arthritis Cure and Care Act (PPARCCA) which was recently introduced.  This bill authorizes psoriasis data collection at the CDC and voices Congressional support for public-private sector efforts to advance psoriasis research and find a cure.
2.     Enlist the support of a request for $1.5 million to allow CDC to implement the second phase of its psoriasis data collection efforts, initially funded and begun in FY 2010.
Not too much to ask, right?  Basically, when you hear statistics on many diseases, they are often quoted by the CDC.  Right now, the CDC doesn’t track psoriasis so it is harder to keep meaningful records which hinders research.   

Most of the Virginia group after our meeting with Senator Warner
After our second meeting, we went to grab snacks in the cafeteria in Russell Senate building and talk about our plan from there.  One of our group members was really not feeling well – her psoriatic arthritis was acting up and just walking around for the morning was making her feel terrible.  We told her there were plenty of people to cover the meetings and she should go home and feel better.  She was disappointed to leave, but realized we would make sure her story was heard. 
As a result, I jumped in for an extra meeting, and Robert and I headed off to lunch before meeting Representative Connolly’s LA to talk about how serious the disease was.  We pointed out that we were a team member short because of it’s impact – further proof to anyone who thought it just might be itchy skin.  
After that, Robert was going to Congressman Kent (in Pennsylvania) along with a wonderful mom, her two kids (Carly and Katelyn), and her sister in law.  These little girls have both had psoriasis since they were young (it was caused by strep throat and misdiagnosed at first).  
They got to get a picture at the Congressman's desk.  I was kinda jealous... 
After signs of psoriatic arthritis started, one had to go on treatments that caused her hair to fall out, and asked her mom “When will I be a princess again?”  Can you imagine the pain that must cause a child, not just physically but emotionally?  Sure, there are treatments, but the long-term effects are often unknown, and the short-term effects are so rough.  The good news is that the treatments are working very well and both are cleared now! 
Carly and Katelyn were awesome.  These girls are stronger than most adults - and are lucky to have such great family that support them.   
I then met up with my local team so that we could meet with Congressman Moran’s  LA for our last meeting of the day.  Overall, I think we shared a lot about the disease and what it can really mean, which was the largest goal.  Please, consider sending a note to your Congressman telling why they need to help find a cure for psoriasis by going here.
We then took the buses back to the hotel and had a wrap-up session where we shared the best and worst stories of the day.  I must say – as a 25 year old, it’s tough to agree to take two days off of work to sit in conferences and long days.  Not exactly your ideal vacation.  But these last few days were SO WORTH IT, which should tell you just how much it meant to me.  Great conference, NPF! 
Time to tell about our day and the adventures while visiting the Hill
It was finally time to say goodbye, and it was weird to leave people that I’d only known for a few days but felt I knew so well.  I hope some of you have now decided to start reading the blog, and please know I will continue to share your stories and hope that together, we can make a difference. 

Tuesday, June 14, 2011

National Volunteer Leadership Conference

Writing this blog post has taken a lot of work – simply because I have so much to say.  The only way I could finally comfort myself about all the things I have to leave out is to say that I will return to some of these stories and people later.  There were just too many of you, but thank you to everyone who spoke to me and courageously shared their story, or offered to help.  This Challenge has been one of the most rewarding but exhausting experiences of my life, and meeting all of you made me wish I had more hours in the day to devote to the cause.
So, back to the story.  After the race, I went home and got ready for day one of National Psoriasis Foundation’s National Volunteer Leadership Conference.  This conference covers a range of topics and helps to engage many of the most active volunteers from around the country.  Then on Tuesday, it concludes with Capitol Hill Day, where we speak to congressional representatives and advocate for psoriasis and psoriatic arthritis.  When I first arrived, I was greeted by Linda’s familiar face and some other NPF people who knew about what I was doing, even if I didn’t know them yet  They were all wonderful and welcoming, which helped me feel at ease.  Something that did seem weird to me was that everyone around me seemed as though they already knew each other, even though we’d just arrived.  Only later on would I realize that many of these people have been attending the conference for years as a way to share their experiences about living with psoriasis and psoriatic arthritis with people who get it.  And more importantly, it would only take me a few hours before I too felt like I was around some of my closest friends. 

The first workshop that I went to was called “Getting your point across”.  It taught us how to better communicate through hyper-local media (your local newspaper) and social media.  It was interesting that part of the course was led by someone that I have been following on Twitter for awhile but had never met in person.  The beauty of social media right there!  @NessieHasPSA did a great job teaching us about how to best contact local papers and how to use Twitter and blogging to reach people.  You should check out her blog, “lipstick, perfume and too many pills”.
There was a reception to meet different sponsors/companies and I got some great samples to take home to Mom (as well as some great Neutrogena sunscreen, which is my favorite for races!).  There was a reception and a documentary premiere which I heard was great, but I’d been awake since 3:45 AM so I decided to head out early.

Day two started around 8:30 AM.  Traffic in DC can be unpredictable, so even though I live very close to the hotel I left early.  While waiting for the first event of the day, I happened to run into EZ Goen, who is currently riding his Harley across all the states in the Continental US and talking about life with psoriatic arthritis.  I’ll write more about him in a later post because it’s a great story of strength and overcoming the disease, but for now, read his story here.
 NIAMS Presentation
I then went to an opening session on the research done with NIAMS, the NIH division that deals with psoriasis and psoriatic arthritis and heard a lot of updates about NPF from Rick Seiden (Immediate Past-Chair) and Randy Beranek (President & CEO).  One thing they mentioned was that the walk revenue went from $400,000 in 2007 to $1.3MM (projected) for 2011.  Talk about growth!  Let’s hope 11, 12, 13 Challenge can make a big contribution to that figure soon. 
 The video that Alyssa made.  She used clips from the first day and made it overnight.  Wow.
We also heard about some wonderful volunteers and heard from Alyssa Krafsur, a fourteen year old girl who stayed up until 3:30 AM the night before creating a video about day 1.  Alyssa is a true fighter as she’s battled intense psoriasis/psoriatic arthritis and is now the namesake behind Alyssa’s Fund.  You can read about her here
  He gave a great speech and presented a Build-a-Bear to NIAMS as a thank you for their help because dealing with psoriasis "can be a real bear"

At this point, we went for our first morning workshop.  Mine was on the Advocacy Caucus and helped prepare us to become better advocates.  We were seated in round tables, and I think the highlight of this was the people I met.  One woman was there with her husband (but they went to different sessions to get the most info from the conference) for her son.  Despite the battles her family has faced, she is constantly smiling and was great to talk to.  
 This was the first (of many!) steps to prepare us for Capitol Hill Day
I also had the chance to talk a fellow runner who told me about his psoriasis story (which ends in a victory, so awesome!).  I’m hoping he still means it, but he actually offered to give me one of his plane tickets from frequent flyer miles so that I can go to a race later this year.  Can you believe how generous that is?  I told you these were some of the nicest people I have ever met.  Not even exaggerating. 
 He's right - advocacy works!  Help us spread the word.
We had a lunch where they announced various awards for the top volunteers, and I had some great conversations with the people around me.  I was introduced to many impressive people at NPF and got to share my story with so many people.  I hope some of them are reading this now! 
 Volunteer of the year nominees.  Their dedication was inspiring.
I spent the afternoon learning about research advances and some “in the works” treatment options, led by Bruce Bebo, the Director of Research & Medical Programs.  It was a really exciting and interesting presentation that was way too short at an hour and a half.  I’m pretty sure everyone in that room would have stayed twice as long – they actually asked us to leave so we could make it to our next session on time!
Learning more about psoriasis and psoriatic arthritis.  I could have spent all day on this alone!
After that, we went to training for Capitol Hill Day, where we sat with other residents from our state.  We learned what to say, what we were advocating for, worked with our team to prepare our presentation, and work out the logistical details.  In part because the conference was in Virginia (and in part because it’s such a great state), we had a lot of people!  This gave me a chance to meet even MORE wonderful people, some of whom I hope to keep in touch with long after the conference. 

Panel to prepare for Capitol Hill Day
The day concluded with a dinner for the Northeast volunteers (organized by Linda) where we all had a chance to meet and talk.  Many of them have been working to raise money and help NPF for years and years.  Great food and great conversation – perfect ending to a long but wonderful day.  I headed home to get ready for Capitol Hill Day in the morning!

Love it!
The hope and the inspiration in that room were real. It brought tears to my eyes more than once as I realized how many people were fighting and winning.  To anyone who thinks psoriasis is simply an itchy skin condition, you are wrong.  It changes people’s lives and attitudes.  As NPF says,  it’s “more than skin deep.”  It is an autoimmune disease, so it opens them up to increased risks for many other diseases.  It can develop at any point into psoriatic arthritis, which you already know from my mom’s story can be a terrible disease.  One girl said that lifeguards wouldn’t allow her in the pool as a child because they didn’t believe it wasn’t contagious (it is NOT contagious).  They talked about the staring, and the difficulty finding jobs.  They talked about the fear of having children because they don’t want to pass along the disease.  But all of this aside, they shared one thing with me:

Everytime I open my iPhone, this image shows up.  It's what I hope to do every day and why I won't give up.
HOPE. Many have gotten treatments to make it go away.  Many have learned to love themselves and won’t let the disease rule their life.   And sure, it can be a tough battle.  But we can make a difference, and the amount of hope you could feel at any given time in that conference was truly inspiring.  And now, I too hope – I hope that we can raise both awareness and money during this year, because it’s a truly worthwhile cause.