A lot has happened since our last update! Our foundation has been able to give Dr. Chen and his research team $1,300,000 since 2016. This has allowed our research to keep going and he has been able to hire several more people to continue his amazing research! They have successfully made a TRUE AVM in an animal model and Dr. Chen and his researchers have been able to travel the world to speak about all of their clinical findings. This has allowed other researchers to be able to make AVMs and study different treatment modalities. This is a HUGE breakthrough for the medical community and for those suffering from this rare disease. Dr. Chen believes there will be no more surgeries for those affected by an AVM, that one will have to take a medication and the AVM will disappear! Of course earlier detection is of utmost importance as well. Mark and I, along with Dr. Chen, were recently interviewed by the TODAY show via telephone and our story will be on their website some time this month. It is rare disease day on Feb. 29th. And it is leap year so that is rare in itself. Ryan is working at Woodforest Golf Club on the range four days per week and is currently going to TIRR in The Woodlands twice per week for physical therapy and occupational therapy. He is trying out the Bioness system to help him walk and is having great success. It helps him to lift his drop foot and his knee. It helps build his muscles and prevents falls. Stay tuned for more updates on our research. Thanks to all who have volunteered, prayed and donated! YOU are making a difference and changing lives and we are forever grateful!
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Good Afternoon! Hope everyone had a great Valentine's Day. Five years ago on Valentine's Day our family moved into our current home in Woodforest. I always joked about how any gift could ever "top" that Valentine's Day gift....and this year my gift was the greatest one ever! We were in the hospital with our son, Ryan, who had another brain surgery and this time his AVM is gone and so are his seizures! They ended up separating his entire right side of his brain from his left side. Pretty much the entire right side was either damaged, had an AVM, or was causing seizures so it really wasn't doing much of anything except causing trouble. Along with that great news, came some really exciting updates on our research with Dr. Chen and Dr. Kim. We will hopefully have a write up soon we can post with the results. Until then, we just want everyone to know that the research is going very well and more rapidly than anyone thought it would. We started up our Student Ambassador program with a kick-off meeting this past Sunday. These kids are so amazing and have such giving hearts. They will be selling raffle tickets for our 4th Annual Crawfish Boil on Sunday, April 14, 2019 so be on the look out for those. If you or anyone you know would be interested in being a student ambassador, please contact us. Thanks and God Bless everyone for their prayers and support!
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AuthorThe AVM team works to deliver up to date information on the Foundation, AVM's, better treatment and earlier detection for AVM patients. Archives
November 2024
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