Lupus Event!

Yesterday was AH-MA-ZING!

 

I attended the

 

 

in downtown Los Angeles.

 

Earlier this week I'd gotten a call from the Walk for Lupus Now walk director asking me if I'd be available to stay after the seminar to get a private tour on the Lupus Bus that is touring the nation and to have cocktails with the PRESIDENT of the LUPUS FOUNDATION of AMERICA!!!!

 

I was stoked!  So much so that I went and bought a new outfit! 

 

I figured every mom of 2 needs a good pair of skinny jeans and tall black boots!

 

Emma was a little sad that she wasn't going with me, but after lots of hugs and kisses, I was on my way.

 

I love downtown LA. (just not the traffic)

 

***♥***

 

When I arrived at the conference center, I immediately felt like a celebrity!  It was crazy.  People recognized me from FB and YouTube and from the walk's homepage.  I couldn't believe it, I'm just a nobody from a pin size dot of a town in the midwest.

 

I was sitting at the table by myself  waiting for the event to start and Amanda Greene (LA Lupus Lady, she blogs HERE) said,

 

"Oh I can't believe it!  I get to sit by Team Knaup!" 

 

She was so funny.  We became instant friends and spent the whole day together.

 

There were 3 different doctors who spoke.  Each one focusing on different topics:

research

medicine

clinical trials

lifestyle

coping

 

It was awesome.  I learned so much!

 

After the seminar, we headed out to the Lupus Tour Bus!

It was parked right across from the Staples Center!

 

YAY!  There's me.

(Hey Aimee, do you recognize my purse????)

Here's my dear, dear lupie friend, Wendy Rogers.  Her story is truly inspiring.  You can read about it HERE.

Here's Amanda again. (LA Lupus Lady)

She is seriously a RIOT.  So much fun and enthusiasm.  I really enjoyed hanging out with her.

Here we are inside the bus.  It has state of the art, interactive, informational technology! SO SO SO cool!

This was my favorite station.  You point to the dots on the screen to the part of your body that you'd like to know more about how lupus affects and the screen pops up information for you.

I figured this one would be a good one to read about. ;)

I took a photo of Amanda taking a photo.

heheheheh

 

***♥***

 

After the bus tour, we headed over to the restaurant

to meet up with some friends.

 

You might recognize a few of them...

Left to Right:

Randall Winston, Sandra Raymond, and Tichina Arnold

Randall is the producer of Scrubs, Spin City and co-producer of Cougar Town!

Sandra is the President of the Lupus Foundation of America

Tichina is an actress.  She's plays Judi from the show, "Happily Divorced".  She was also on "Everybody Hates Chris" (she played Rochelle).  And I remember her as Pam from the TV series, "Martin" back in the early 90's.

 

 

There was also one more celebrity there...  

IAN HARDING from "Pretty Little Liars"!!!!

 

 

I got to shake hands and make small talk with all of these people!  It's so crazy how lupus connects you to individuals you never would imagine.

I had such a great time talking with Dr. Merrill (middle) and Sandra. 

Dr. Merrill's presentation today was just awesome.  This is the second time I've heard her speak about lupus.  The last time was several years ago, she was speaking in Las Vegas so Brian and I drove out there.  She's that good.

 

And Sandra was so incredibly sweet. I've talked with her on the phone a few times, but since the LFA's office is in DC, she doesn't make it to LA very often.  But she actually KNEW who I was and thanked me over and over again for all that Team Knaup has done in the name of lupus. 

 

I extend that on to you all!  To my fellow teammates and to all you very kind and generous donors. Without your donations and support, Team Knaup would never have gotten to this level of recognition. 

 

In the lupus community,

we have arrived.

 

***♥***

 

As I was driving home, I was thinking about how far we've come.  Not only how far I've come personally on my journey with lupus, but in the field of lupus. 

 

20 years ago, people barely knew anything about lupus, and now...

we are starting to make it a household name...

like Susan G. Komen

and

the American Red Cross...

lupus will get there.

 

I find it VERY interesting that MORE people have lupus than:

 

 AIDS

SICKLE-CELL ANEMIA

CEREBRAL PALSY

MULTIPLE SCLEROSIS

AND

CYSTIC FIBROSIS

COMBINED!

 

Doesn't that just seem crazy?

 

***♥***

 

Every year we dedicate our team to two very special ladies

My cousin Diane who passed away from lupus at the age of 17.

Renee's mother, Angie, who passed away from lupus at the age of 22.  Renee was 2 years old and her brother was 4 years old.

And those of us on the team who have lupus,

myself and Alisa,

we long for a cure so that our littles will not have to worry about lupus or what it can do to the structure of our family.

 

I fully believe we will find a cure.  I think we are closer than we've ever been, but probably a lot farther away than I'd like it to be.

 

Until then, we must keep pushing,

keep fighting,

keep demanding the very best from our doctors and congressmen

to continue researching and funding clinical trials so that a cure can be found.

 

***♥***

 

So I leave you with HOPE.

 

Because,

 

I may have LUPUS,

but LUPUS does not have me.

 

***♥***

 

PS - I just wanted to say "THANK YOU" to everyone who texted, called and left voicemails, emailed, or left comments on Facebook yesterday.  I felt the love all day long.  It was awesome.  Thanks for taking the time to send encouragement!  Love you all!!!!