Saturday, June 14, 2014

May 31, 2011: Recap of the IRSF conference in Boston


It was an amazing experience and we wanted to especially thank those who gave us private donations to help us with traveling and medical expenses. 

Dick Hoyt was the keynote speaker.  There wasn’t a dry eye in the place.  He is so inspirational.  I think Billy and I were the only ones we knew who he was before though.  He basically created the jog stroller and pushed forward with the eye gaze technology for his son.  Dick is 69 and Rick is 49.  They are still racing.  If you don’t know who Team Hoyt is, check them out on YouTube. 

Dr. Khwaja is leading the clinical trials in Boston. Phase 1 had 12 girls in it, who were all from the Boston area b/c they had to be at the hospital so often.  Phase 2 begins in Oct.  They are accepting applications through August.  We will submit one even though they already have far more applications than the 40 slots.  We have no idea what the criteria is that they are looking for, but they want it to be as homogeneous as possible.  And it’s based on a severity score that was pre-determined, but none of us know what it is.  We decided that we want Cameron to be part of this if she was chosen and we would do whatever we had to do to get to Boston so frequently.  Hopefully they want 2 year olds!   During phase 2, half the girls will get the IGF-1 drug and half will get a saline placebo during the first 20 weeks, then there is a 6 week flush out period, then the shots will flip flop.  Parents and doctors do not know who has what.  You have to be in Boston once a week for the first 3 weeks, then once a month (for 12 hours) after that.  He said that ethically, they must stop the trials at any point if it’s deemed dangerous.  Conversely, they must ethically stop the trials at any point if it’s having an immensely positive effect and there is no point continuing so they can release it to the masses.  Let’s hope the later happens!!!!  He made is very clear that this is not to cure Rett, but to reverse symptoms.  After phase 1, they have seen some positive results and no adverse affects.  They were no allowed to discuss them though.  There was a father there who had a girl in phase 1.  He said that his daughter could say 2 words now: rainbow and elephant.  Those are pretty complex words!  That’s pretty amazing.  I can’t even imagine!!

Other than hearing about the clinical trials, the best part for us was the communication sessions.  It confirmed a lot of things we thought about Cameron (i.e. that she understands everything!) and gave us some useful tips.  Now we really have to watch what we say around her!  We have to figure out how to ask her questions in the right way b/c she's always trying to communicate with us.  Susan Norwell (language expert from Buffalo Grove!) presented and showed videos of her working with girls with Rett.  She had never met these girls before.  They totally understood everything she was saying and asking.  They communicated with her through eye gaze or cards.  It's quite remarkable.  Now we just need $20K for that eye gaze!!! 

It seemed as though girls who were able to walk before the regression phase regained the skill around 2 and the girls like Cam who didn't have the skill to begin with gained it after 3.  Three has been the goal in the back of my head this whole time.  

We learned that some girls didn't get seizures or "breath holding"/hyperventilate until after 3, so that's something that still could happen.  It was good to see some video clips to see the different types of seizures so we would be able to identify it. 

Cameron’s "night terrors" are not hurting her.  She isn't aware that they are happening.  Girls with Rett cannot regulate their bodies like us in the transitions from sleep to awake or vice versa.  We may wake up, grab the covers, roll over, go back to sleep, and not remember it in the morning.  Cameron can't regulate that awakening period.  It was good to know that she's not in any pain or doesn't even know it's happening, but it’s sort of scary to hear and see.

Hippotherapy (horse back riding) is supposed to be an extremely helpful therapy.  It strengthens the core muscles.  It also helps with muscle memory b/c the walking gait of a horse would imitate ours and in turn help in learning to walk.

That was just a tiny recap.  In a couple of weeks, the IRSF website will be updated with informational slides from the conference.   

It was so important for us to connect with other parents, share stories, ideas and experiences.  Some parents brought their daughters and that was interesting to see more girls at different stages and ages.  We are going to do whatever it takes to go each year. 

Thank you for all of your support. We are filled with so much hope.  


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