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June 23, 2000 - the day I became a mom and the day a life's course was set that was never anticipated or wanted, but so apprecisted. HAPPY BIRTHDAY, ALEX! (My Alex, that is...)! It's been a while since lacing up the sneaks for ALSF, but ALSF has always provided the wind in my sails! Alexander would be 24 years old today - I just wish we could celebrate here on Earth versus Heaven. We miss him so much but remain profoundly grateful for the 14 years we had with him here, and the continued 24 years of people, experiences, perspectives and opportunities of being his parents, friends, and family - Alex, you continue to bring so many wonderful people into our lives - we miss you and know your spirit is still alive!
After a nine year battle, we knew we so lucky to have him as long as we did - we were given a 30% chance of 3 years survival - we had him for 9 amazing years... Double Black Diamond runs at Breck, Snowboarding, Flying airplanes and just being a friend - we witnessed a lot of life in too few years. When Alex was dying, we did not idly standby and watch our son pass without purpose. We harnessed our arsenal of medical connects - our 9 year rolodex of researchers and had blood pulled, plated and transferred into mouse models that are still part of Neuroblastoma research. Periodically we would check-in on Alex's - for 9 years nothing. Stubborn... and nonresponsive, somethings seemed to never change, until late 2023. On January 6, 2024, I found myself tearfully reading an email of hope. It seemed that the latest generation of an ALK inhibitor we last gave Alex coupled with a sensitizer that enhances a tumor target expression, not only stopped Alex's cancer cells from growing but shrank them. It seems they are onto the "one-two" punch to kill Alex's cells. Why is this so important when our Alex is already gone - it provides insight to other kids with an ALK expression, especially kids who have had 9 years of complex treatment. To think if this combination existed when Alex was diagnosed, perhaps he's be still alive. Researchers are hopeful to move this into clinical trial - it takes time and money to do so. Despite what a lot of people think, private industry is only a partner in finding cures, when there is a evidence that what they choose to produce is profitable - it is organizations like ALSF that bring truth to power... and money. We want to make sure that effective drugs get a shot and making into kids and saving lives!
It will be 10 years since my first marathon for ALSF and 10 years since Alex's passing. So in memory of Alex and to continue our support of ALSF I am giving the Windy City a Whirl! On October 13, 2024 I will be hitting the pavement and hope you will join me by donating in Alex's memory to my run page.
Why ALSF versus other organizations or ones more local to our home in Dallas ? QUALITY RESEARCH! ALSF does not limit its support to single institutions or single cancer diagnosis - they transcend all pediatric cancers, support young investigators globally and are the catalyst organization for some of the most ground-breaking and life-saving advances in pediatric cancer care. Is ALSF's work limited to pediatrics - Yes, and no... Yes, they focus on pediatric cancer research but, pediatric research often emphasizes basic science research which is the cornerstone of understanding the hows, whys and whats of all cancers - including adult. Basic science research is the basis for all research! So we can all benefit from ALSF's investments.
Please join me - no sweat for you - on supporting ALSF and a dream for cancer-free tomorrows.
Please join me in my journey to raise awareness and funds for ALSF and those battling cancer - my hope is for a cancer free tomorrow!