October Niemann Pick Awarness Challenge

Walk for a Cure in Memory of Riley Corbitt 2010

This year for Niemann Pick Awareness Month we are challenging people to find 11 people to donate $11 each. This is such a simple way to raise a lot of money. I know we are a month away but I wanted to put a bug in every ones ear so you could start making your list of the 11 people you are going to ask. Also remember to challenge others to find 11 people to donate $11 each!!

Stay tuned for more details as they come along from the National Niemann Pick Disease Foundation.

Walking for a Cure...In Memory of Riley Corbitt

So the whole reason we went to Alabama was to attend the Walking for a Cure event. In past years they have walked from Woodville to Scottsboro, which is 18 miles!! I was happy to hear that they shortened the walk to 10 miles. Because believe me I was hurting at the end of the 10 miles. It is hard work pushing that wheelchair. I tried to get Tylor to switch me places but he wouldn't. It was a good thing I had Amber with me!

The walk started at 10am on Saturday October 16th from the Woodville High School. Upon entering the school we were surprised with a banner that read "Welcome Tylor". I started to cry...how thought of Haley and Paula!! Before the walk Haley let off a bouquet of balloons for Riley!

I was so happy we went there and participated in the walk. I learned so much about Riley! She always had a smile on her face and she loved butterflies. She had to nicknames...Riley Bug and Boo. Thank you Paula, Haley and all there friends for making us feel welcome. See you again next year!

Riley Corbitt

We Made It!

A few days ago I blogged about us taking a trip to visit a NPC family we met in Seattle at the NNPDF family conference. Today we left at 6am to make the 11 hour trip to Scottsboro, Alabama. The trip went pretty well even though every gas station we stopped at was not really handicap accessible. I made suggestions on how to improve the accessibility which were not taken real well. If only they had to deal with someone in a wheelchair for a day maybe they would realize how difficult it is to get them around.

Coming down into Scottsboro there is a steep grade hill and Tylor got to see the run away ramps for the semis. He was able to see tracks from trucks that had to use them, he thought was pretty cool. I am sure it wasn't too cool for the truck drivers.

After getting checked into the hotel we were going to grab a bit to eat....well there was a problem with our room. The people didn't check out that morning and rented the room for another night. What??? I reserved this room for Thursday through Saturday but they told me sense they were there first there was nothing they could do about it. They offered us another handicap room but it was smoking...no thanks. But they kindly told me the room would be available tomorrow night and what are we suppose to do tonight, I asked?? So back on the road we went to find a hotel. We found a Hampton down the road, they staff was getting and got us into a handicap room right away.

Tylor is now sleeping snug as a bug in a rug....

Remember Riley

In August 2009 Tylor, Sy and I went to Seattle for the NNPDF family conference. While there we met some amazing families struggling with NPD or struggling with the loss of their child from NPD. Unfortunately, we never got to meet Riley Corbitt but we did have the honor of meeting her family and friends. Tylor hit it off with them right away and really bonded with them. So in support of National Niemann Pick Awareness Month and Riley's family we are heading down to Alabama to participate in the Walk-a-Thon!! I know driving 12 hours to walk crazy right?? So I decided to make a vacation out of it. 

Niemann-Pick Disease Type C Walk-a-Thon

Saturday, October 16, 2010

Woodville, Alabama

Riley May Corbitt (NPC)

7/27/02 -10/29/08

The Woodville (Alabama) High School Student Government Association will sponsor a walk-a-thon in memory of Riley Corbitt (NPC) on Saturday, October 16. The event will begin at 10:00 a.m., at the Woodville High School.

Walk-a-thon participants are asked to try for six sponsors each, representing the six years Riley was with us. Click here for a sponsor sheet.