On Friday, February 9, we formally kicked off our efforts with a night of cocktails
and hors d'ouevres that turned out to be both deeply moving and wildly successful.
Sharon
King, my mother and a member of the steering committee, opened the program with introductions and a heartfelt speech.
We were lucky to have Lance Johnston, executive director of BDSRA, and his wife with us for Chapter One, and Lance followed Mom with an overview of Batten Disease and the current state
of support and research. With my brother Stephen at my side, I closed the program with a speech of my own. Afterwards, our
father, Jim King, surprised his family and the crowd by reading a Father's Day card from Taylor. Though unplanned, this
portion of the evening may have been the most emotional of all.
The generous and compassionate people in attendance
donated just under $40,000 at the conclusion of Chapter One, and we expect that number to grow significantly
as matching gifts, pledges and additional donations continue to come in. Thank you to all of our supporters for making
our mission possible. Together, we will succeed.
Because Leslie and Bruce Schlernitzauer of Porcupine Provisions
generously donated both the use of their beautiful home and all of the food and drink, 100% of donations will go directly
to Batten Disease research and the brilliant scientists who are dedicated to finding a cure.
Thank you also to
everyone else who made Chapter One a night to remember: Lance Johnston, Scott Benson, Jane Siemens, the Council for Children's
Rights, all of our wonderful steering committee members, and the rest of our angels. You know who you are.
T went to see Dr. W on Tuesday. She and Mom flew up to NY early in the
morning and came back that same night, so it made for a long day, but T was brave and stuck it out. Dr. W gave us good
news, too! Aside from T's vision, the disease does not seem to have progressed very much at all since her last appointment
in September. Time is still precious, though, because Batten Disease is unpredictable, and children can take a sudden nose
dive without warning. We can't ever take a single day or good report for granted.
T was excited to get her
Gerald Wallace bobblehead doll last night. Thanks to the Bobcats and to a kind friend at the hospital for making that happen!
A, and his wife with us for Chapter One, and Lance followed Mom with an overview of Batten Disease and the current state
of support and research. With my brother Stephen at my side, I closed the program with a speech of my own. Afterwards, our
father, Jim King, surprised his family and the crowd by reading a Father's Day card from Taylor. Though unplanned, this
portion of the evening may have been the most emotional of all. 
