PLEASE DO NOT SHARE THIS BLOG Date: August 22, 2025 1) Eve’s Role & Interest • Title: Creator Marketing Manager at Sequencing.com •...

PLEASE DO NOT SHARE INFORMATION ELSEWHERE Meeting covered cohort composition, data strategy, IRB/ethics, funding considerations, a...

We’ve just wrapped up Meeting #4 of the Sleep-Onset Oscillatory Vasomotor Myoclonus (SOVM) project, and the progress is exciting on every...

SOVM Sensitivity & Variability The following summarizes the integrated framework linking the three main sensitivity categories observed...

🧠 What we’re learning: • Hypnic jerking likely involves REM-like motor activity intruding too early into lighter sleep. • This reflects...

Summary of Week 3 Meeting • We explored  personalized medicine  for SOVM and identified  direct treatment options  mapped to my own...

Articles he's been sending me through the week were unbelievably validating to the SOVM theory. I'm super glad I've been recording the...

Dr. Jay Lombard, DO https://cmbm.org/team/team-member/jay-lombard/ Kickoff Meeting #1 – Summary, Agenda and Notes July 18, 2025...

Our 2-year-old daughter has been having Hypnic jerking since she was 4 weeks old. She’s had 3 EEGs, and seen 5 neurologists, 2 sleep specialists, a movement disorder specialist, and a hematologist. I discovered I was anemic in pregnancy, so we followed up by giving her an iron infusion. We gave 3 doses of iron a day to be sure, and eliminated all dairy from her diet. Still, they persist. No one has answers. It seems no one cares. I can’t get anyone to conduct any genetic test

Propriospinal Myoclonus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736211/ Surgical Treatment of Propriospinal Myoclonus: [...

While preparing to write my story, I reviewed the journal which I have kept for four years, now totaling 100 pages. On August 27, 2018, the jerks hit with no warning. There was such a sense of bewilderment and disbelief about what was happening. The first five doctors I saw could not unravel the mystery as to what caused the jerks or how to stop them. One neurologist declared that in his 35 years of practice, he had never seen anything like this. He was not alone. The doc

My Clonazepam Taper This is a long post about my clonazepam taper. It’s my experience. Yours may differ. None of it is intended as advice. Please consult your doctor before changing medication doses. I’m three years into sleep myoclonus. For more than two of those years, the benzodiazepine Clonazepam allowed me to sleep, with some support from other medications, supplements, and behavior. Without medication, I’d repeatedly awake with a strong jerk in some muscle or muscle gro

Angiotensin is a protein hormone that causes blood vessels to become narrow. It helps us to maintain blood pressure and fluid balance in...

To a large extent, the science of sleep has remained a mystery. Let’s look at the role of the spine and the brain for a moment. We know...

Bringing together patients and researchers to accelerate rare disease treatments by building the most robust, cost-free rare disease registry in the world.

Dear CoRDS Partners, We hope you all are doing well and your new year is off to a great start. As you have noticed, CoRDS has been working on new features for participants, partners, and now researchers. We are excited to announce the launch of our new researcher access portal. This portal will be used for researchers to submit requests for data or to have CoRDS contact participants on their behalf. Researchers will be able to obtain the de-identified data in real time throug

Have you updated your Sanford CoRDS survey? Please update your survey responses when something changes or otherwise annually. You will...

You might find these practitioners helpful along your journey. Find an Atlas Orthogonal doctor https://atlasorthogonality.com Find a functional MD/practitioner: https://www.ifm.org/find-a-practitioner/ Find a neurological chiropractor: https://acnb.org/DoctorLocator.aspx

When you come across an interested researcher or physician, here is what you can share: 1. The google link to HJ (Hypnic Jerking) videos....

Calcium Dysregulation and Melatonin: See earlier blog entry regarding calcium cell signaling driving sleep entry. Can more answers be...