Monday, February 21, 2011

One SMALL Step Date

Good Morning! I hope everyone had a great weekend. The weather was absolutely beautiful! 

I am happy to report that I have secured a date and location for the One SMALL Step for Prader-Willi Walk-A-Thon. It will be Saturday, August 27th at Heardmont Park (5458 Cahaba Valley Rd, Birmingham, AL 35242). Now that we have a date and location, we can start planning and preparing for this event. As you can imagine, I am going to need some help. I would like to set up a planning committee. If you are interested in participating, please let me know. Here are the things the committee will be focusing on:

Sponsorship-soliciting donors, collecting prizes
Course management-marking the course, course marshaling, clean up
Publicity-coordinating with news and radio stations, distributing literature
Volunteerism-gathering interested volunteers and assigning positions
Entertainment-determinging entertainment needs, booking entertainment
Silent Auction-collecting items for auction, running the silent auction

I look forward to getting this event up and running.

Monday, February 14, 2011

One SMALL Step Walk-a-thon

I made the jump. I will be hosting a One SMALL Step Walk-A-Thon, an international fundraising event to support the Foundation for Prader-Willi Research's (FPWR) efforts to find a cure for PWS. Last year, on August 15th, 10 locations across the U.S., Canada, and the UK hosted walks in their communities and together raised over $225,000. The organizers of these events were parents of children with PWS, like me.

I can't do this alone. I will definitely need help! If you are interested in helping me with this wonderful cause, please contact me at

First thing's first, I need to find a location for this event. For all of you in the Birmingham/Trussville area, do you know of a great location to host this event? Maybe a park (with lots of shade?) with a great walking trail? As I am not very familiar with the area I would love your help. I need to try to book a location ASAP. I am thinking of hosting it August 13th. (I know this is one of the hotter months, but I don't think I will have enough time to do it sooner. I plan to try to move it to May next year.)

Thank you for any help!

Sunday, February 13, 2011

Still Hungry for a Cure

I have to admit, I don't think about PWS much. Delilah is at a remarkable stage where we don't even notice it. Except for a few development delays (mostly speech), she is just like any normal child. Yet, every once in a while PWS hits me like a ton of bricks, knocking the wind (and tears) right out of me.
This afternoon has been one of those days.

I came across this video on Facebook. It was beautifully created. I held it together, right until the young girl said she couldn't have babies. So unbelievably sad and unfair. I knew this was one of the symptoms of PWS, but to hear it come from a young girls mouth made it that much more real.

But let's back it up a little. Before one can have babies there has to be a significant other. Will that be possible for her? Will it even be possible for my daughter to go on her first date? Will she ever have a boyfriend? I don't think about these things ofter, but when I do my heart grows tighter and tighter. I want my little girl to have everything she desires in life, including LOVE. But how can I make this happen? One word, Fundraising.

We need to raise money for research. Research to find a cure for PWS. Research to help my little girl grow up to lead and independent life. A life she deserves. A life that all children with PWS deserve.

I am in the beginning stages (very beginning) of figuring out how to host a fundraising event. May is Prader-Willi Awareness Month and I would really like to plan a walk-a-thon or something similar to raise money for PWS Research. Here's the thing, I have no idea where to begin. I have ideas, such as hosting a silent auction at said event, but am unsure of where to start. Any ideas or suggestions? This is all very new to me, but I am determined to make it happen. If you would like to help or know where to lead me, please leave a comment or email me.

And be sure to watch the video. It is truly worth the time.

Wednesday, February 2, 2011

First Day

Delilah had her first All About Me class today, at The Bell Center. I dropped her off at 8:15 and picked her up at 10:05. She did just as I expected...WONDERFULLY! The girl knows no strangers. As soon as I set her down in the room, she ran off to play without looking back. The therapists said she had a great time, with just a little crying at the beginning of circle time (totally expected). As time goes on, she will learn to love that pesky circle time. I really can't speak highly enough about the outstanding therapists and volunteers who work at The Bell Center. Delilah is going to blossom there.