When you come across an interested researcher or physician, here is what you can share:
1. The google link to HJ (Hypnic Jerking) videos. https://drive.google.com/drive/mobile/folders/1IImD8DIHGaBDMiIQgHyLbJFMXjQ9L_Od?usp=sharing&fbclid=IwAR3o1MmG2m1mr-kmX8YUx8coan_nwIpldBHOaHil7d8cNT9W_x4HSgwcJiY
2. Excessive Fragmentary Myoclonus article. Shows how to look for evidence of Hypnic jerking on a sleep study/polysomnogram.
https://www.sleepreviewmag.com/sleep-disorders/movement-disorders/excessive-fragmentary-myoclonus/
3. The video of us interviewing Sanford Research. https://drive.google.com/file/d/11RgPeGIM8NoajGESnChSHw3hpfkQjk3h/view
4. Share the graphed summary of our first 100 responses to our IRB approved Rare Disease Hypnic jerking survey (on our website page https://a14fa623-7d43-4cef-ad57-a95046481d19.filesusr.com/ugd/c5a6f6_f0d4310edaa34ba4997d67700fa2ff10.pdf
You can also share that we are awaiting results of Whole Exome Sequencing
genetic testing from The Manton Center / Boston Children’s Hospital.
Comments