After first experiencing symptoms (back pain, loss of appetite/weight loss, balance issues) in late February 2018, Katie was diagnosed with sporadic CJD on May 8, 2018. She passed away on October 10, 2018, one week after her 43rd Birthday.
CJD is said to be extremely rare, with 300 reported cases in the U.S. annually. However, given the difficulties in diagnosing it, and the number of cases we've heard about anecdotally since Katie's diagnosis, we believe the number is much higher.
CJD is a horrible condition that creates misery and hopelessness. Although there was not a cure or a treatment for Katie, there were valuable, recent scientific advances that were a benefit to us, such as the RT-QuIC diagnostic test.
Our goal going forward is to use our experience with Katie to help others facing CJD. The funds raised in memory of Katie will be used to support the CJD Foundation, which was a great source of information and comfort to us during Katie's ordeal. Ultimately, we would like to raise enough money to fund research grants through the CJD Foundation to support research efforts dedicated to finding treatments and hopefully a cure for CJD.
*Update 10/30/18--Thanks to the wonderful generosity of so many donors, we've reached our initial goal of $25,000 and are now striving for $40,000. Keep the momentum going and spread the word...we can make a difference, just like Kate did!!!
**Update 12/5/18--We continue to be amazed and comforted by the generosity we've seen in memory of Kate. We have now passed the $40,000 threshold and are aiming for $50,000. Help us help others facing CJD...we can do it!
***Update 5/21/20--It's been awhile since we've provided an update, but the release of Katie's latest book "Hurry Up! A Book About Slowing Down" makes this a perfect time for one! As you can see, we've made it past the $50,000 mark and our current goal is $60,000. Your donations to date have funded 3 research grants in Katie's name to some of the leading prion disease researchers around the globe. We won't stop until there are treatments or there is a cure for CJD!