the conference

We attended the CFC International Medical Conference in Chicago from the 28th-30th. Wow! We arrived at The Westin O'Hare on the 27th and came home on the 31st. Jackson was in medical clinics and research trials all day on Thursday. He saw Cardiology, Genetics, and Dermatology in one clinic. The geneticist is on the CFC Medical Advisory Board. Jackson also saw a vision team and an orthopedic doctor. The research trials included blood work, a urine sample, a skin biopsy, and saliva from all family members. There were numerous research trials available for us to sign up for. I signed up for most trials. This of course means that Jack had a bag taped to his boy parts overnight, blood drawn, saliva collected, and his forearm numbed and a skin biopsy taken. It was all for research to learn about CFC/Noonan/Costello Syndrome. I don't have much information from the clinics right now. I am awaiting forms in the mail.

We met many CFC families. It was quite an experience. I could go into detail about how CFC Syndrome, Noonan Syndrome, and Costello Syndrome are related, but I will just direct you to CFC International or maybe you can do a search for RASopothy or the RAS/MAPK pathway.

Without writing an entire book about the conference, I will just say that I truly hope the next conference, in two years, is a distance that can be driven. Thank you to my mom, dad, aunt, and uncle for helping at the registration table!
This is most of the CFC kids/adults that made it to the conference.

 This is Ashley(age 5), Graham(age 3 1/2), and Jack. The girl on the right is Maya(age 5)

 Jack and Ellison(age 3 1/2)

 Kinley, Jack, and Meg(13)

 Ava

 

The woman in green holding the little girl, Hailey, is Brenda. She is the president of CFC International. Her son is Cliffy, to her right. He is 18. The girl on the left with the dark glasses and dark hair is Jessica. She is 26. She is holding Nola.

 The girl with the poofy hair is Rachel. We had a talk on Friday. She asked me questions about Jack. I could tell she was having trouble finding her words. Her questions were as follows: "What is wrong with him? Does he has cerebral palsy? Is he ok? Does he talk? Can he talk? He is trying to talk! He is smart! He will talk!" The girl with the glasses, holding the little girl, is Jessica again! She is fully aware! She talked like a healthy 26 yr old. She is taking 18 different medications. She cannot work due to chronic pain. She has had heart surgery. She has gastric paresis.