As I mentioned last month, I'm training to run in the Thunder Road Marathon here in Charlotte on Saturday, December 8 in order to raise funds for research and public awareness of Batten Disease.

I want to get as many people as possible involved in the way of both fellow runners and pledge donors. If you're interested in joining me that day, please email me! If you're not up for the long race, there will also be a 1/2 marathon, 3-person marathon relay and 5K from which to choose. For more information on the day's races or to register, visit www.runcharlotte.com. I'm going to have running shirts with the Taylor's Tale logo and the web address printed up for purchase; more details on that to follow soon. In the meantime, please let me know if you're interested, so that I can get an idea of how many I'll need to order.

I'll also work on a pledge form and should have that up in the next couple of weeks. If you're running, start seeking out pledge donors. If you're interested in making a pledge, please email me!

Thanks to everyone in advance for your support!

I am happy to announce that on July 14, the first-ever Taylor's Tale research grant was awarded to Dr. Sandra Hofmann of UT-Southwestern in the amount of $50,000. Dr. Hofmann plans to apply this fund to research focusing on developing enzyme replacement therapies for infantile NCL (INCL), Taylor's form of Batten disease. We have been told, also, that what works for INCL will likely work for late infantile (LINCL) with some tweaking. We have the potential to touch a great number of children with this new hope.

The biggest issue with Batten, like most brain-based diseases, is that the blood brain barrier prevents us from getting therapies where they need to go. Dr. Hofmann's work will center on determining a combination of peptides that, when attached to PPT1 (the enzyme lacking or severely deficient in INCL patients), will allow it to cross over the blood brain barrier. In addition to identifying these peptides, her lab must determine how best to "fold" the resulting compound over so as to push it through most effectively.

$50,000 will fund this project for one year. I want to thank all of our donors from the bottom of my heart. Dr. Hofmann's research has great promise, and I believe that eventually, it can lead us to a cure. However, I also want to stress that this battle is far from over. We must continue our fundraising efforts, and we must continue the early success we've experienced. While the foundation is there, we must continue to build upon it. Time is our greatest enemy, and we must do it quickly. I can't help but think of all of the children I saw at the BDSRA conference prior to the NCL congress in Rochester. I know we are too late to save some of them, but I want to save all that we still can, and I want to have an answer ready for all of the children who are yet to be diagnosed with Batten disease. A year ago, Taylor was one of those children. We knew her vision was faltering, but we never could have imagined what was in store. There are still more parents-to-be out there who are carrying this hateful gene but won't know it until their future children are diagnosed, as Taylor was. I encourage you, if you're reading this, to see all of these children as I do--as something worth saving. Please do what you can to help us as we continue to support these researchers in their mutual quest to find a cure.

I musn't forget to thank our wonderful steering committee members who were so instrumental in raising $62,500 in a relatively short time. Though we didn't officially kick off our campaign until February 9, we took home BDSRA's first-place fundraising award, which recognizes the largest individual effort over the past year, at the closing banquet last weekend.  Congratulations to all of you.

Tomorrow, July 24, will be the one-year anniversary of Taylor's tragic diagnosis. I have known it was coming. Tomorrow will be difficult, but let it serve as a reminder not only of how far we have come, but also of how far we have to go. That awful day was one that will never be forgotten. The pain caused by that day won't be alleviated until we've won.

I'm a little brain-dead right now, having spent the weekend trying to absorb all of the information presented at the NCL Congress in Rochester. We've worked incredibly hard to educate ourselves over the past year, but that never could have prepared us to sit in on sessions with some of the brightest minds in the world where this disease is concerned. They hailed from all over the globe, including the U.S., Great Britain, Germany, Finland, Norway, Poland, Liberia, the Netherlands and even Australia. And there we were, the English major and the piano major, furiously scribbling away during the presentations and doing our best to ask the right questions whenever we had a chance. Thankfully I've got a vacation to look forward to, but once I've returned, I'll make sure to report back here with additional details.

I do also want to share that Taylor's Tale, through BDSRA, has just named its first beneficiary; the grant was awarded at the BDSRA annual conference banquet on Saturday evening. Next week, I hope you'll revisit our website to learn more about the project. Thank you again to all of our wonderful donors. Check back soon to learn more about how your generous contributions have been tagged to help us get closer to a cure!

Mom and I got back from Rochester this morning. Suffice it to say that these past several days have been right up there with some of the most difficult either of us has ever faced...but then, the past year has not been lacking for days such as these. Words can't even begin to describe the pain caused by seeing all of the affected children at the BDSRA conference. Out of respect for the children and their families, I will not go into detail about what I saw at the conference on this site. With that said, I can't get their images out of my mind. I see them even now, back home in Charlotte, hundreds or even thousands of miles from most of them. My heart breaks for every last one of them, because in the case of those most affected, we are too late to save them. If we are to save the rest, we must hurry. My heart breaks for Taylor, because in the absence of a miracle, they are her future. In the absence of a cure, the story's ending is inevitable. If we didn't keep fighting, I could go ahead and write the last chapter of Taylor's Tale, because I know exactly how it would end. These kids have a quiet courage and a strong spirit, but their bodies are broken in every imaginable way. Now, more than ever, I understand just how cruel this disease is. It takes away everything. If we don't save Taylor, I'm not sure how I can ever watch it happen to her.

T desperately wanted to swim on the neighborhood swim team, as she has in summers past, but because of her vision problem, she instead had to settle for swim lessons. Then, her swim teacher told her that she'd come far enough along to swim in the last meet of the year. She would get in the pool to be right there if T needed help.

That meet was scheduled for several weeks ago. Just before it began, the sky opened up. It was finally called off after an hour or so of torrential rain, thunder and lightning. That broke my heart. Mom and T had gone out and bought the team swimsuit especially for the occasion, and T was so excited. More than anything else, T just wants to be normal.

Sometimes, though, unhappy situations have an interesting way of working themselves out. There was an exhibition meet tonight, and T was allowed to swim freestyle. She did so well that they let her swim backstroke. T shocked all of us--except perhaps herself--by winning her heat.

Even though she is almost totally blind, T accomplished something tonight that I was never able to do fully sighted. Who could have known that something so simple could be so beautiful?

T and her buddy from the Metrolina Association for the Blind, Mr. Ian (as she affectionately calls him), went to SouthPark Mall for cane training yesterday. Mr. Ian said that if T can master the use of her cane in the mall, she'll be set.

T, of course, went in style. She carried a purse and used her own money to come home with treats for Sunny, including a new leash with paw prints on it.

Right this second, she's got Dad hanging her American flag banner from the kitchen door frame. Happy Fourth of July!

Sometimes I just want to ask, "Why?" When does it stop being hard and start being unfair?

How many more beautiful days will I see, days that make me first incredibly happy and then unbelievably angry because T can't see them? And how do you deal with anger when it's directed not at one person or greater power, but at a disease--something so intangible and yet so real at the same time?

Fighting it is the only way I know how.