Blessings and Prayers

All is well in the Hartz household... We have been busy planning our summer and we're definitely going to make up for last summer! We will be off to Cedar Point in June, Ocean City in July and Hershey to attend a Wiggles concert with some of my great friends. Landon is a huge Wiggles fan and Jimmy and I are fans because our little guy loves them. We've had plenty of laughs as we watch him dance to the songs. On another note, less than one month ago the Cystinosis Research Foundation (CRF) hosted a conference in California. We did not attend although we were pretty bummed not to go. We had so much going on in April and I had a bit of anxiety about getting on a plane and traveling across the country with Landon. He's so well behaved but he's 2 and I'm not sure how he would handle such a big change in his routine. I should give him more credit than I do, but we decided that this year was not going to be the best year for us to go. There was lots of chatter amongst those in the Cystinosis FB Group about what was discussed and presented. I was so jealous! The rumors I heard are that there is some promising research coming out one of which is to offer better treatment for the eyes so hopefully people with Cystinosis will not have to put eye drops in their eyes every waking hour, or as often as possible. To think that Landon may go to school and we won't have to worry about putting eyes drops in his eyes as often as possible is mind blowing! I also heard a rumor that a study would begin recruiting that would look for a cure. A cure! Yes, a cure! I spoke with Nancy Stack (founder of the CRF) yesterday and she confirmed it and told me that information would be available later that evening about recruiting and who they are looking for. Now, this is not a study that Landon is eligible for and actually there is a very specific population that they are looking for.. But, oh my goodness, there is actually a study that is looking for a cure and human subjects are being recruited. Nancy assured me that there are wonderful studies to come. It's all just such a blessing. Landon is part of a very small, special population and to know that there are researchers committed to making the lives of Landon and all those with Cystinosis better, is amazing and such a blessing. This leads me to our upcoming fundraisers... There will be a golf event on July 6th. We are in search of golfers, donations for our Chinese Auction and business to sponsor holes. E-mail me for more information LaurenLHartz@gmail.com. We also plan to have our 2nd annual Lots of Love for Landon Halloween Fundraiser in October. We had a blast last year. I will provide additional information as it becomes available.