CRF Conference 2015

"Great things are brought about and burdens are lightened through the efforts of many hands anxiously engaged in a good cause." - Elder M. Russell Ballard Jimmy, Landon, Jordan and I packed our bags and ventured off to California last week. It was a 4 1/2 hour flight and a 3 hour time difference and every second of it was worth any stress that the flight and time difference caused. The boys did awesome although there were a handful of moments that Jimmy and I just looked at each other as we took deep breaths. Two tired little boys can be challenging but 85% of the time they did so well! We were there from Wednesday until Sunday and the conference events were held from Thursday evening until Saturday evening. Thursday evening there was a Mexican dinner on the beautiful patio of the hotel in which we stayed. Forty families were present at this conference and a whole lots of adorable children of varying ages. One mom described her son, on several occasions, as the cute blond boy. The irony of that is that there were a whole lot of cute blond kids there along with a couple of redheads (people with Cystinosis often present with blond or red hair and a fair complexion). So imagine, a herd of very cute mostly blond kids running back and forth along a patio as fast as they can. It was quite a sight and I was beyond excited to see some the other moms who I talk to on the phone, text and private message on Facebook. Friday began with one of my favorite parts of the conference but an absolutely emotional part of it. Families are asked to take turns standing in front of the group to introduce themselves and to present a paper dove cut out with words written to answer the questions of what is your hope/prayer or for what are you thankful. To summarize what Jimmy and I presented was that we are thankful for the Cystinosis community- for the love, the support and the friendship, and we said that our prayer is that Landon will never see his disease as making him less than or that something is wrong with him. We pray that he will accept and maybe even embrace Cystinosis in all of the lessons and silver linings that it provides. Such important information was provided this day and I don't feel comfortable enough to summarize much of it in this public forum simply because I cannot do it justice. What I will say is that we learned that the nanowafer that has been developed as an improved alternative to the eye drops may be ready to recruit for human subjects by December 2015. The study to find a cure could begin recruiting the first human subjects in about 8 months depending on approval from the FDA and the IRB (Institutional Review Board which is a group that reviews and approves research studies). Only a couple of people will be recruited at first and the criteria will be that the individual must be 18 years or older or could be younger and unable to tolerate one of the available drug therapies. There will be 3 phases of the study and phase 1 will take about 3 years to complete. My hope is that there will be a cure before Landon needs a transplant, but regardless of that, Cystinosis is just a part of Landon and whether the day comes that he needs a transplant or not, it will be okay. He is just right how he is made. And if he has the outlook that so many of the adults that were present at the conference have then he will believe just that. Friday ended with a gourmet cookout and a bunch of those cute little kids covered with sand and soaked with water. They had a BLAST! I wonder if any of them really ate any dinner at all. I sat by myself at one point and just watched my boys with such amazement that they are mine and that we were able to have this experience together. Saturday discussions involved information about muscle health and neurological concerns. There was an adult panel which was so memorable. They included a very special, selfless group of people who are so resilient and so happy and living life to the fullest. My heart was overwhelmingly touched by this group of people. One woman says that she volunteers and acts as a pin cushion so that they can learn more for our children. There was a fundraising panel that I was asked to be a part of. We discussed our experience with fundraising. Jimmy and I got lots of ideas and look forward to implementing them at our fundraisers to come. Saturday evening ended with the Natalie's Wish Fundraiser which is in its 13th year. I cannot even describe how wonderful this event is. It is so cool to watch the live auction take place and the generosity of people is overwhelming. $2.3 million was raised in one evening. Incredible, right?! We are just so thankful for what people are doing to better treatment and to find a cure for Cystinosis. We are so blessed- so, so blessed!