Day 2 – Vasculitis Foundation Conference 2015 in Jacksonville Florida

300Put one foot in front of the other
And soon you'll be walking 'cross the floor
Put one foot in front of the other
And soon you'll be walking out the door

Anyone remember that famous animated Christmas classic – Santa Claus is Coming to Town?  How about the Song? Put One Foot in Front of the Other. Sung by the voice talents of Mickey Rooney and Keenan Wynn?

After Day 2 at the Vasculitis Foundation’s Conference I am reminded of the lyrics of that song.  It strangely keeps running through my head:

You never will get where you're going
If you never get up on your feet
Come on, there's a good tail wind blowing
A fast walking man is hard to beat

Today theme for me was research.  When it’s been and where’s it’s going.  Dr Peter Merkel from University of Pennsylvania Health Services gave a wonderful overview of the Research Advances that are being funded by the VF talk.  He really emphasized the importance of keeping researchers interested in researching vasculitis.

I really think the ‘there is a good tail wind blowing’ and we need to start walking toward 1468543_832137833500804_2813103773110131101_nmore and better patient centered research.  Dr Merkel quote of “There has never been more research going on in vasculitis in the the world than right now” was a statement I think every Vasculitis patient needs to hear.  I could hear my inner song of the day…   We are putting ‘one foot in front of the other…’  The research is going on at all levels and because of new affordable care act funding there is money being made available for Patient Centered Outcome Research and the VPPRN is taking full advantage of that.

Dr Merkel went on to explain the whole list of acronyms that would make you head swim and how each is working together.  I am sure these will all be available in slide form soon so I am not going to attempt to even sort them out for you but the bottom line is Hospitals are being linked together to better share data about Vasculitis and Patient Network centers are being formed and getting up to running speed to gather the intangible patient information about how vasculitis really affects the patient and how we really feel (not just lab numbers and test results).   So in essence, the groups needed to further research in Vasculitis are getting together, forming partnerships and moving forward at a pace never seen before.  YEAH!

But…  always a but right?  This CAN NOT happen without the patients being involved.  We need to as a group speak up and get involved.  There are many things we may not share with our doctors or our doctors may not ‘hear’ when we tell them.  This is our chance to be heard and start, ‘ walking out that door’ to better health in the future.

How can you help?  Funny you should ask.  Join the V-PPRN (Vasculitis Patient Powered Research Network).  I find it kinda fun if you do it through their portal called V-Bold.  Then it seems more fun and you can earn ‘points’ to get some of that cool SWAG you saw from the convention and you can even get enough points by just answering surveys about how you feel or about a recent flare that you get to have a one on one conversation with a researcher (kinda cool…).

Please do not think because you are feeling better OR you are in remission that your 10942515_10152963945716117_1161029882694283833_ninformation is not needed.  You are needed more than ever!  How did you get to remission?  How are you staying there?   You can share as much or as little as you choose and can change your settings in the future. (baby steps people…).

If we don’t participant than we are saying, as a group, that we don’t care about Patient centered research… got you thinking now?  I do not work/volunteer for the V-PPRN and was highly skeptical when they first came out about the security of my medical records and how much to share.  I like the idea that I have options and the latest secure data resources are being used to protect your medical record.  I get to choose how much to share and when?  And I can earn points toward some nifty VF stuff…   kinda nice incentive.  You can even earn points to pay for your annual VF membership fee (even better).

So….

If you want to change your direction
If your time of life is at hand
Well don't be the rule, be the exception
A good way to start is to stand

Time to stand -up people for research.  We can be quiet and sit back in our bubbles but the squeaky wheel gets the grease and I plan on being that squeaky wheel.  If we all band together image how squeaky we can be.  SO it’s time to ‘start to stand’ and ‘put that one foot in front of the other’.

If I want to change the reflection
I see in the mirror each morn
(Oh you do!)
You mean that it's just my election
(Just that!)
To vote for a chance to be reborn

Just saying…

That my readers is my take-away for Day 2 of the Vasculitis Conference.

After the morning session,  I listened to some insightful talks by researchers and doctors that were funded through some of these programs.  They gave us insights to their advancements and findings in the world of Vasculitis (all which will be on u-tube videos and slides I am sure in the not too distant future).

IMG_3675

A little overcast… fine, make that thunder and lightening… water taxi anyone?

 

I had a delightful river cruise (aka river taxi ride) with a few fellow vasculitis patients and we spent most of our time laughing, talking and sharing and to tell you the truth 95% of our conversation had nothing to do with our illnesses.  We are people with Vasculitis and we are still exciting and fun people and sometimes we need to put Vasculitis on the back burner and just smile, laugh and have fun.  So, if you think these conference are Vasculitis all the time, you are far from the truth.  The VF conferences are what you make of them.  Attend with a positive attitude, an open mind, and a smile on your face and you will be rewarded both mentally and emotionally, but more on that tomorrow…  for today just remember…

Put one foot in front of the other
And soon you'll be walking 'cross the floor
Put one foot in front of the other
And soon you'll be walking out the door

See Day 1 – VF Conference 2015

See Jacksonville or Bust – pre-conference thoughts

See Other Karen in Wonderland Blog Posts

Return to Karen in Wonderland main page

See more info about CSS /EPGA


Posted in Uncategorized by with comments disabled.

Pingbacks & Trackbacks