Thursday, Sept. 1, Connecticut Children's Medical Center has invited our family to participate in their annual radiothon on 102.9 FM in Hartford, CT. We'll be on the air from 11-12 to talk about Connor and SCLS. This the second opportunity we have had to share his story and the information about SCLS in a public forum. He was featured in our local newspaper in Feb. 2010 for International Rare Disease day. Just putting a bug in everyone's ear about getting the word out there about this. Anytime you have the opportunity, we highly recommend you make your story, or your loved one's story, known about SCLS. The only way to get $$ to fund research is to make everyone aware of this rare, incurable, lethal condition. If you're interested in learning more, please go to Connor's page - https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=490700&supId=334881908#, or the radio stations site if you want to tune in - http://www.drcfm.com/. Thank you, The Thompsons

Great you are doing this and thankyou for taking the time to "spread the word". I wrote oprah winfrey about my brothers story a couple years back before the "Mystery Diagnosis" episode and always thought scls would also make a good "House"episode but don't know who to write to. I agree that spreading the word to health care professionals as well as the general public will help with research funding. This is a difficult disease to live with as an adult but my heart really goes out to the kids and their families. It is a lifetime of episode management for them. The great thing is a lot of people are doing pretty good in supressing episodes with theophylline and IVIG and it seems we have come a long way in the short time since my brother was first diagnosed. Hopefuly that will continue. It's kind of like the saying "the wheel that squeaks loudest gets oiled first".so we all need to keep squeaking! Good luck with the radiothon! Linda