Longtime readers may note that Armand and I used to engage in “cookie nights”, where I would open a box of Soft Batch Chocolate Chip cookies, and he would systematically claim most of the cookies for himself by simply taking a single bite out of one, put it down next to him, grab another, take a bite, place it down, and so on.
Tonight we are having another cookie night. However, Armand is not participating for a plethora of reasons, not the least of which being he had his fourth seizure of the day (after going 72 hours without one) and falling asleep. So, I’ll just have to eat twice as many.
Who am I kidding, I’ll have to eat three times as many.
Tomorrow I’ll be heading downtown to the Clear Channel Radio studios, home to LITE 94.5 FM. One of the personalities there, Kim Faris, hosts a weekly 30-minute show called Focus on Dayton. Last year, I came on to her regular daily morning program to talk about Rare Disease Day, and a bit about Armand. This year, we will be again talking about Rare Disease Day (and maybe a bit about Armand as well), but I will be joined by another local parent of a rare disease child; Dr. Utz, Armand’s pharmacologist from Minnesota (who will be calling in on the phone), who speaks nationally about rare disease treatment; and Senator Sherrod Brown (also on the phone) who was a co-sponsor of the Creating Hope Act, and is now pushing for more legislation for research on treatments of rare pediatric diseases.
Air times for the show locally are
Air Time: WCHD 99.9 FM - 6:00 a.m. Saturday, Feb 2nd Air Time: WMMX 107.7 FM - 6:30 a.m. Sunday, Feb 3rd Air Time: WDSJ 106.5 FM - 7:00 a.m. Sunday, Feb 3rd Air Time: WLQT 94.5 FM - 7:00 Sunday, Feb 3rd Air Time: WXEG 103.9 FM, WTUE 104.7 FM, WONE 980 AM / WIZE 1340 AM - 7:30 a.m. Sunday, Feb 3rd
There will also be a download available, and it will stream on the internet.