Fox News Rising Friday Dance Party

By Laura Edwards

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!


Notes From Germany, Day Four

By Laura Edwards

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 specificall
y 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


Notes from Germany, Day Two

By Laura Edwards
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 non-profit organization 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 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.

Never Stop Dancing

By Laura Edwards

I went to Andre Hairston’s cardio funk class today for the first time, and I’m already a huge fan! I’m a group exercise novice and wasn’t blessed with great rhythm, but from the time the music started, I couldn’t stop! (To learn more about Andre and his popular cardio funk class, visit www.andrehairston.com.)

Taylor’s Tale is so lucky to have Andre’s support. On Saturday, June 27 at 10 a.m., Andre will offer a special cardio funk class at Myers Park Presbyterian Church in Charlotte to benefit Batten disease research. A $10 donation to Taylor’s Tale gets you in the door.
It doesn’t matter if you’re male or female, young or old. Andre’s calorie-burning dance moves and mix of music styles offer something for everyone. And if you join us for Cardio Funk for a Cure, you won’t just get a great workout – you’ll help us write the happy ending to Taylor’s Tale. It’ll be a morning in the true spirit of T – a girl whose first love is music; a girl who may dance to her own beat but never stops dancing.
RSVP to Cardio Funk for a Cure on Facebook.