A couple weeks ago I received an email from a person who came across my blog, who has a child with OMA and happens to live near where I live. Actually, our kids have even visited the same doctors! The email exchange has been really helpful to me so far, as the woman was kind enough to let me know about a facebook group for people with Ocular Motor Apraxia, and mentioned to me a research on Joubert Syndrome that she is participating on.
The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.
I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.
If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.
My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!
The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.
I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.
If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.
My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!
