National Volunteer Leadership Conference

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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.