Fox News Rising Friday Dance Party

Apparently I'll do anything for Taylor - including showing off my questionable dance moves on live TV! Thanks to Andre Hairston and everyone from the Taylor's Tale crew who made the trip over to Fox this morning. Check out our starring role!

Cardio Funk for a Cure is in just over 12 hours. Don't miss it!

Taylor's Tale in the News

Cardio Funk for a Cure is this Saturday, and Taylor's Tale has spent the week in the spotlight. We were on WBTV's News at Noon on Tuesday and the cover story in the South Charlotte Weekly issue that came out today (check it out here). Tomorrow morning, we're scheduled to appear on Charlotte's Fox News Rising Friday Dance Party at 7:30.

In the meantime, it's not too late to burn calories for a great cause. Remember - Saturday @ 10 a.m. in the Myers Park Presbyterian Church gym, located at 2501 Oxford Place. We hope to see you there!

Taylor King, Sixth Grader

I've been officially mired in my longest stretch between posts since I started my new blog in February; the Charlotte summer has arrived - along with its trademark near-unbearable humidity - and I think it has fried my brain.

I haven't written about T in awhile, so a quick update: she "graduated" from elementary school the first week of June and officially became a middle schooler. At the moving up ceremony, her teachers recognized her for her "inspirational attitude" and her "amazing accomplishment of learning Braille." Well said.

Every time I see T lately, I'm shocked all over again at how quickly she's growing up. She's getting tall. She has a crush on a boy who's not on the cover of a Disney album, but rather a real-live classmate, and she's already talking about this fall's sixth grade dance. I see her thinking often, the way she does - she gets real quiet and still and tilts her head as if to train her gaze on something off to the side, though her gaze is unseeing. Sometimes I want so badly to know what's going through her mind, to understand what it's like to have the things happen that have happened to her. But then I would have to have Batten disease.

I don't know what is going through T's mind day in and day out, but I think I have an idea of what's in her heart.

Tears sprang to my eyes as T's friend guided her up the

steps to receive her fifth grade certificate on moving up day.

Really - how many parents cry at these things? And I'm only the sister - the sister who sat with the dad in place of the mom who was on another continent trying to save her daughter's life.

I'll never step back, evaluate my sister's life and decide that she has had her fill; I can't say, "well, she made it to sixth grade and learned Braille and ran two 5Ks, and that's already beating the odds;" it will never be enough, and I'll never stop fighting for more. By that, I don't mean to detract from the blessings that have graced the first 11 years of her life. I am so thankful for those. And, since I'm on the subject of moving up day and achievements and growing up, my heart goes out to those angels who have been a compass for T, who have encouraged her and loved her and carried her - and her family - when we could not walk. T is our angel; you are hers. Stick with us awhile longer - we have more miles yet to walk for this girl.

Notes From Germany, Day Four

I just read my mom's latest CaringBridge entry and pondered how to summarize her words here for my last Notes from Germany post before realizing I could never tell the story as well as she has. The conference is over, and Mom now has only to make her way back over the Atlantic and home to Charlotte. Usually, the words on this page are mine. The ones that follow now are hers. 

Good morning!  Well, it is already Sunday morning in Hamburg, Germany - early evening in Charlotte.  I have been in Hamburg since Wednesday morning for the International NCL (Batten disease) Congress.  The Congress is held every two years and alternates between the US and Europe.  I have met and talked with researchers from the US, UK, Belgium, Finland, Japan, Denmark, Germany...during the first lunch meeting, the woman sitting next to me was from Moscow.  We struggled with language but managed to communicate just the same. 

There is a good deal of interesting research happening, but nothing that is close to being our miracle.  I admit, it has been a difficult week to keep a smile on my face. Then, I pick myself up, paste on that smile and take myself right back out there.  Don't misunderstand - there is good work being done, and it needs to keep going.  It is just not happening within the next year, and I want help NOW.  

There are several research projects specifically for INCL (T's form of the disease) that need funding or continued funding.  Most importantly, Dr. Hofmann (Taylor's Tale has funded her work for the past two years) will need a third year of funding.  She was the second presenter at this conference and announced that she is ready for preclinical trials.  She has made the enzyme and must now determine a delivery method to the brain.  You can't imagine the joy and pride it gave me to hear that information...and the gratitude I feel for our friends and family who have made it possible for Taylor's Tale to provide the support.

During the final session of this conference,  I heard the first report from the Portland trial.  The presenter arrived yesterday and was genuinely shocked to find that Child Number Four's dad and I were attending this conference.  "I didn't think parents would come this far."   I wanted to say, "Come on, I'll go to the ends of the earth for this child. I did the trial, isn't that proof enough?"  He shared the data with us over breakfast before the public unveiling.  There was nothing shocking.  He was able to share, however, that there is absolute proof that the treatment T and the other five children received shows great promise.  Unfortunately, they were able to get that proof because of the death of one of the children.  Signing on to the trial was one of the most frightening times of my life.  I have no regrets.  I don't think it is the answer at this time, but I believe it has helped in some ways and given us important time. This research must continue.  There are so many people to thank for the opportunity we had to take part in the trial - the sponsor, the team at the hospital in Portland, our friends and family who kept their hearts wrapped around us, and of course, the families of the five children who bravely went before Taylor.  I have always felt that my family expanded to include the other trial families the day T had her surgery.  It is a bond that will always exist.

I hear that Hamburg is a beautiful city.  I didn't come as a tourist - this was a mission.  I've seen nothing more than the subway station (my luggage took an extended visit in London as I headed on to Hamburg, so I decided to save taxi fare and took public transportation), the University and my hotel.  This was a free afternoon, so I grabbed my book and headed down for tea.  I stayed in my corner of the cafe for three hours - the most relaxed I've been in months. You might be wondering why I didn't walk around the block.  It is COLD, and I brought spring clothes.  People are wearing wool coats and sweaters!

Taylor had a big week while I've been here.  She finished up the fifth grade.  Laura sent the cutest picture of T and her friends at the moving up ceremony.  Thank goodness for the Internet!  Also, Jim and T went back to Duke and left with a prescription for a new drug therapy that we want to try.  The hope is that it will help provide stability while we wait for that miracle.  We'll keep doing all that we can to keep our girl as healthy as possible while the researchers do their work.

The dad and granddad of a newly diagnosed five-year-old boy, Noah, attended the conference.  The sadness, fear, frustration and yes, anger, is so apparent.  My heart just ached for them.  Those feelings don't go away with time; you just learn to control them a bit.  Please support Taylor's Tale and our research fund.  There is good science in the works, but it will need support to get to the clinic...I know that it can get there!  Noah, Taylor and so many others are counting on us.

I look forward to getting back to Charlotte tomorrow night. As always, thanks for helping me believe.  Miracles happen every day.

Love, Sharon

Cardio Funk for a Cure on You Tube

Check out a moving video message from Andre Hairston, host of Cardio Funk for a Cure. Come out to Myers Park Presbyterian Church in Charlotte on Saturday, June 27 at 10 a.m. to support our quest to cure Batten disease. A $10 donation gets you in the door.

Thanks so much to Andre, who has generously given his time and talents and put on an enormous display of compassion in his support of Taylor's Tale. 

Watch the Video

Notes from Germany, Day Three

Mom wrapped up Day Three in Hamburg and is just a few hours away from Day Four, the day the conference wraps up. She got a lot of questions answered, but with answers come more questions. There is so much to learn, so many people to talk to - and the work won't stop when she returns back to the States. It never does. We won't stop fighting. 

No news to share here tonight, but I'll be back in touch tomorrow. T's trial results are scheduled to be shared. 

Notes from Germany, Day Two

Mom sent me her latest update around 2 a.m. her time after her very full first day in Germany. She talked with several families, including one "new" one - a father (whose son was diagnosed just a few weeks ago) and his father-in-law. The little boy's father and I have already been in touch via email. There is another family in Hamburg who, like us, started a new nonprofit to fight the disease, and yet another father whose son, like Taylor, was in the Portland trial. 

I accompanied Mom to the last NCL Congress when it was in Rochester, NY, two years ago. It is a very high-level, very technical conference. Few families attend, because the presentations are clearly geared toward experts. I think I finally began to truly understand how much our lives had changed forever when I, an English major, sat with my mom, a music major, in a hotel banquet hall far from home, listening to a scientist from Washington University School of Medicine discuss the systemic and metabolic abnormalities associated with Infantile Neuronal Ceroid Lipofuscinosis (INCL).

That's part of the battle, though. And thanks to BDSRA and Google and the birth and continued development of Taylor's Tale and the reality of living with this disease each and every day, we understand so much more than we did two years ago. And we are not the only ones whose understanding is developing, becoming fuller, stronger. Progress is being made. 

Dr. Sandy Hofmann, whose INCL project Taylor's Tale has funded (through BDSRA) since that same summer of 2007, was on the schedule today and announced that she is ready for preclinical testing. That's very exciting news! Mom caught up with her briefly afterward and planned to talk with her in more detail later, so I hope to share more insight into this next phase - and how we can help make it happen - in tomorrow night's post. 

Dr. Robert Steiner, lead investigator for the historic trial of which Taylor was the sixth and final participant, arrived in Hamburg today. Results from the Phase I trial will be presented on Saturday - a moment I know my mom both craves and fears, if only for the reason that it is so intensely personal for us.

Tomorrow's program includes topics such as "A Study of CLN3 Function in Mouse Brain Endothelial Cells" and "Mechanisms of Neurodegeneration in Late Infantile Neuronal Ceroid Lipofuscinosis CLN6." The music major will be there.

Notes from Germany

Mom is in Hamburg, Germany to represent Taylor's Tale at the 12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL). Each day through June 6, check out my blog for updates from this gathering of the world's top Batten disease experts - those who represent our greatest hope for preserving the dreams of children like Taylor. 

Mom didn't make it to the University today after her longer-than-expected journey over the Atlantic. After flying the first leg to Dulles in Washington, D.C., she watched through the window as Air Force One headed down the runway en route to the Middle East. Her own flight was late getting into London, and when she finally touched down in Hamburg, she traveled to her hotel without her luggage, which opted for a longer layover in London and still had not made it to Germany when I last heard from her. Mom was greeted with chilly weather - people were dressed in jackets and turtlenecks, and no one was wearing strappy sandals the likes of those that hit the streets in Charlotte well over a month ago. 

We're about seven hours behind Hamburg, but I'll make an effort to post updates as quickly as possible throughout the duration of the conference. Mom's alarm should be going off shortly - the first session starts in a few short hours, and you'd better believe she'll be there.