Lobster Fest 2014 was a huge success!

Friends, Colleagues and Supporters –

What a great time we had for our big milestone year! We were so happy to be able to have our neurosurgeon, Dr. Storm from CHOP, this year to meet many of you and say a few words of encouragement and gratitude. He has been such a large part of our lives for the last 10 years and we are so blessed to have access to such a talented surgeon. He is now the Chief of Neurosurgery at CHOP. We were also happy to have Dr. Resnick from CHOP join us again. We have been working closely with his team and A Kids’ Brain Tumor Cure Foundation to include CHOP in our research projects. It was another successful year for us with over $60,000 raised to help further the exciting research that is in process as a result of your crucial support. We have already sent this money to help fund an additional installment for the drug trial that was organized last year with A Kids’ Brain Tumor Cure Foundation and several hospitals. Dr. Resnick’s team is a participant in this project. As we had previously told you, we now have more project applications than we can fund and momentum is on our side. It is a very exciting time in our research efforts. The Dana Farber Low Grade Astrocytoma Program we helped launch, has made great strides in identifying some promising biological targets and they are feverishly working towards testing various compounds available to impact these targets. There is a terrific webinar available which gives a great summary of the biology of these tumors and the various drug trials that have been completed or are in progress. It really sums up the results of all the efforts over the last 10 years. Why Not Me has been a participant in many of these initiatives. View “A Parent Education Webinar: Biology Pathways As Targets for Pediatric Low Grade Glioma Patients“.

For those of you that were able to attend the event, we hope you had as much fun as we did. The weather was great and Wyatt did another exceptional job of “jamming” with the band this year. He just seems more confident every year. We also had so much fun giving back to all of our event sponsors that have supported us for these last 10 years. We hope everyone liked their trophies and we had a terrific time handing them all out and getting pictures. We still have a few left that we will make sure get to their proper homes. The collapsible beer cozies and light up hurricane glasses were also a big hit!

The annual event not only helps us move this important and desperately needed research forward, but gives us the energy we need to continue to support Wyatt through this hard journey. While raising money is important, it is your selflessness and emotional support that is worth more than every dollar donated. For those of you that were unable to attend, check out the photos and highlight video from the event. We think the video this year really gives the feeling of attending the event and is another way we can share it with our supporters. We also have a Facebook page and we are on Google+. We will be locking in the date shortly for the 2015 event, so check back! We are hoping that you will continue to tell your friends and family about us. Even the smallest of donations quickly add up to significant sums of money. We have been starting to receive many more donations through our site. In addition, we are now registered with the Amazon Smile Program, which donates .5% of all eligible purchases. Click here and select Why Not Me as your charity for your purchases.

We are already talking about next year’s event and, as usual, welcome any suggestions for us. Please don’t hesitate to call or email us your ideas. We would especially be interested in your ideas about increasing our business sponsorships or linking into other fundraising groups. Many fundraising groups including schools, churches and sports teams, look for different charities to sponsor each year. Many businesses also have money set aside for these types of activities. As we always say, the most important lesson we’ve learned all these years of fundraising is that it never hurts to ask and all someone can say is “no”. It’s that simple.

Just a quick update on Wyatt since the event. He had 2 MRIs that showed slight changes in his tumor. It appears that the cystic portion grew slightly, but not the solid portion. This can be the result of continued tumor breakdown from the last chemotherapy he was on. However, his most recent MRI showed no further size increase, so we get another 4 month break. His stomach problems have pretty much vanished and he has put on all the weight that he had previously lost. We still have to meet with the endocrinologists to determine if he will need to be put on growth hormone. But other than that, he is doing great. We are so fortunate.

Jerry, Jessie & Wyatt Kilhefner

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