Tuesday, December 16, 2008

Exciting News



 
Wow, I have a lot to share!

First, I've included pictures of the awareness tree that we decorated in honor of children who have battled, or are currently battling brain tumors. I received more than 90 requests so there are almost 100 names on the tree. Obviously that is just a small percentage of the children diagnosed with brain tumors, but we felt this was an important step in raising awareness during this holiday season.



The other pictures you see are from the St. Jude Grizzlies House 5K that I participated in on December 6th in Memphis. I made the drive with two of my good friends and fellow Smiles For Sophie Forever board members, Kim Walters and Elizabeth Gedeon. These two overachievers didn't settle for the 5K,  they both ran the half marathon. I was happy to share the experience with them, and am so very grateful for their support and friendship and commitment to a cause that they know is so important to me.

The race was such an awesome experience. There were 14,000 total people registered to run in the 3 events, and 3,000 registered for the 5K. I am happy to say that, yes, I finished the run. You know from my last post that I was unsure of my ability, but on race day, I know that Sophie carried me. I definitely didn't win any awards and finished in 35 minutes and 22 seconds, but still I finished and felt good doing it. There were times when I thought I might walk, but never did. I actually finished the race feeling like I could have kept going. It was an emotional day and I worked hard to keep my composure for fear of having a break down. Of course being there without Sophie was tough, and seeing the hospital grounds and the look of downtown took me back to a time with Sophie. The 6th was also the due date for the baby I lost back in June. Again, the day was one I look back on and wonder how I survived, but once again, I realize that it is so much bigger than me. Looking around at all the people there supporting such an amazing facility made the 12 hour drive so worthwhile.


While I was there, I met up with Becky Jones (mother of Sam Jones) and her three friends from Michigan. I first met Becky at St. Jude back in the spring of 2007 while Sophie was receiving treatments. At the time, Sam (also diagnosed with DIPG) was there receiving a follow up MRI. Now, a year and a half later, Sam and Sophie watched Becky and me finish our 5K from their special place in heaven. I know they were with us throughout the race and I hope our attempts in raising money for St. Jude might make a difference in the treatment of DIPGs so that other children won't face the same fate. 

Sophie gave me many signs that weekend to let me know she was with us. From the rainbow colored arch that marked the start and finish line, to the number 11311 on the bib that my friend Kim wore, to the rainbow reflection streaming through the window in the ALSAC gift store, Sophie was there.


Kim and Elizabeth (who have run other races) said they were impressed with the organization and friendliness of the people running the event. Kim even said that she would tell someone considering training for a race, that this is the one to do. I think that speaks for itself. I plan on being there again next year. If I was really ambitious, I might shoot for the half marathon, but the realistic part of me is sure I will be running the 5k in 2009.


I want to thank all of you who have given me financial and emotional support. Today I mailed the envelope with exactly $6500 to St. Jude, and I couldn't be more proud.  Lately I've really realized that it is in giving that we receive, and I owe this to all of you.  I appreciate all of you who continually asked me how the training was going (even when it wasn't =), those of you who called or emailed to say "good luck" and also those of you who showed me your support in the form of a financial donation to St. Jude which will make a difference in the lives of children receiving treatment. Did you know that it costs over 1 million dollars A DAY to run St. Jude? So thank you for your support. It means more than you know.


If you are in need of holiday gift giving ideas, please consider shopping from the Smiles For Sophie gift store. We have some cool things that would make great gifts and help us raise awareness. We are still selling ornaments, so you can go to www.smilesforsophieforever.org and look under "upcoming events" and find out how to order one.  Another way that your holiday shopping can benefit the foundation is by clicking on the "igive" link under "ways to help".  This is an online shopping portal that gives a portion back to the foundation.  There are many stores to choose from, so if you plan to do some shopping online, it would be great if you would use igive.



Another foundation dedicated to finding a cure for DIPG is selling holiday cards. Here is a last call for this year's cards.
The Cure Starts Now holiday cards were designed
by three wonderful kids: Andrew Smith from Michigan, Ellie Willaert
from Minnesota, and Caleb Spady from Oklahoma. All three kids are
battling brain cancer and have put their heart and soul into
designing truly unique cards to represent The Cure Starts Now. Please
help us honor these kids, and every child battling brain cancer.
Proceeds go towards funding brain cancer research at respected
children's hospitals nationwide.

The holiday card pack contains 18 cards including a sampling of each
of the 6 custom designed cards for $18. Each card tells a little bit
about the child who drew the picture and about the need to fund
pediatric brain cancer research. Order by Thursday and get them by
the end of the week- There is still time! Please support brain cancer
research while spreading holiday cheer. Cards can be purchased at
www.thecurestartsnow.org under "Merchandise"

Lastly, I have some news that I have been waiting to share since we formed the foundation and set our mission. We are finally ready to begin awarding grants to families battling pediatric brain tumors. If you are the parent/guardian of a child with a brain tumor, you can request an application through our website. It's been about 6 months since we began our fundraising efforts, and we are so excited to be able to do one part of what we set out to do.  To request an application, go back to the www.smilesforsophieforever.org home page, and click on "Grants for Families" in the top tool bar to find out how.


Obviously, we want to find a cure. That is why we give to St. Jude, as well as other organizations that are raising money for research grants. If we knew the cure would be found soon, we might consider allocating all our money to research, but the fact is that while we raise money to help search for the cure, children will continue to be diagnosed with brain tumors and we can't ignore the financial challenges families face while caring for their sick children. In the next couple of months we will be adding a spot to our website so that other non profits committed to finding a cure can inform us of their efforts to raise money for research. Then the Smiles For Sophie Forever board will meet to allocate these funds.


We are so so excited to announce this to you, our loyal supporters. We feel this is so fitting given the season and we will certainly keep you updated with information about the families that we help.



Thank you again for your continued support. We appreciate all the kind wishes, holiday cards, and thoughtful emails to let us know you remember us and how difficult the holidays are without Sophie.


We in return wish you all a Merry Christmas and a blessed New Year. Please keep all the families who have lost children in your prayers, as well as those children and families who are currently fighting cancer.


God Bless You!


Friday, December 5, 2008

Rainbow Christmas Ornament




Your response for the rainbow Christmas ornament was overwhelming. The demand has far exceeded both our expectations and supply.


To meet the numerous requests, we contacted

several companies and suppliers. all to no avail.


We were able to find another rainbow ornament, different in size, construction, material, color, and cost.



The new ornament, in generous supply, still features our signature rainbow (see photo above ) and a Smiles For Sophie Forever ribbon for hanging. We've taken the liberty of substituting this ornament for the original at the same cost to you. Most orders received after December 4 will be placed using the ornament pictured here. Please contact Emily at quayleem@oh.rr.com before Wednesday, December 10 if you do not want the newer version. Your check will be returned. Orders will continue to be filled with our new supply. Thank you for your support and interest, so very fitting in the spirit of the Christmas season. God bless you.