Hi all, I am the chairperson of the Chapter Development committee and I would like your thoughts, ideas and feedback on things that the national office can do to help chapters and vice versa.......please contact me at chawk328@live.com with your suggestions.... thanks!

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My son Thomas (Infantile) has been dealing with mucus for about a half a year. We have been giving him Robitussin about every 4 hours to decrease the mucus (sometimes it helps and sometimes it doesn't). For the past week and a half he has been coughing ALOT and has been on antibiotics for over a week incase of an infection. His oxygen levels were about 93 in the hospital until they put him on oxygen. Does anyone have any suggestions as to why we can't get this under control. We are doing Xoepenex nebulizer treatments and also Mucomyst in the nebulizer also, but it only gives us VERY temporarily relief. The doc is not very good on giving suggestions or when I suggest something he is not very open to try new things. Thomas coughs about 75% of his awake hours. It is very hard for him to catch his breath. I am sure that his chest/ribs are very sore due to the coughing. He has constant rattling in his chest/back area. You can hear it and also feel it with your hand. It also sounds like he is breathing thru water. Has anyone ever dealt with this or have any suggestions of what to try next? Thank You.

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Hi all!! It's been a while since I've asked a question on here and all has changed - looks great!! Anyway, my question: When and how do you decided when to cut back hours/days in school? My son Nicholas, has a juvenile onset of INCL. He is still learning and getting around but tires out quickly. At least once every other week he stays home and if it were up to him I'm sure he would be home more often. Since he is still learning I am hesitent to cut back but I also hate the struggle and the daily phone calls home. It's almost like he shuts down half way thru the day and he is just done! Anyway, any suggestions on what you all have done would be helpful!! Thank, Jill

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Anyone have the latest on the Juvenile trial?

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Heaven received another angel yesterday. Haley Anne Nichols lost her battle with juvenile Batten disease at the age of 28. She lived in Henderson, Texas. She was courageous until the end and never complained. We already miss her so much. A celebration of her amazing life will be Friday, June 4, 2010 in Henderson. Please pray for our family.

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