05/12/2022
A friend and coworker of Barb's (Pam Ooten) volunteered her professional masseuse skills, to help Jacob maintain muscle mass and expel any atrophy. Dr. Kolb and Hollinger agreed that this was a good thing to do and certainly could not hurt!
This would be a our first massage today, and moving forward, it would be a once a week regiment from now on. Additionally, Jacob continues with physical therapy at Teays Physical Therapy.
05/09/2022
SPONSOR APPROVED!
Back to Ohio State University for Jacob's first dose of ION363, a.k.a. Jacifusen. The drug is administered via lumbar puncture. The doctor removed 20 cc of CSF fluid from Jacob's spine and replaced it with the ION363 protocol.
As with most clinical trials, there is a one in three chance that Jacob will not receive the actual medicine and be given a placebo instead. This particular clinical trial is a double blind. This means no one knows now, or ever will know, whether or not Jacob is/was on the actual protocol or placebo.
Phase 1 of the clinical trial will continue this way for the next year, or until Jacob declines to the point that rescue is necessary in order to save his life.
04/28/2022
Dr. Kolb confirms: It is definitely FUS-ALS. This initial consultation was perfect and Jacob met every qualification to be in the clinical trial, sponsored by Ionis Pharmaceuticals. We only need the sponsor's approval to join the program.
04/15/2022
Jacob's Ohio State University Medical Chart was created and an "in person" consultation was scheduled. This is where Dr. Kolb would give us another 2nd opinion and qualify Jacob for the clinical trial.
04/04/2022
Marco Tellez from OSU (Dr Kolb!'s admin) emailed me for Jacob's records from Marshall Health!
03/25/2022
The call with Dr. Kolb was absolutely amazing! He explained the clinical trial process and wanted to see Jacob to check him for the possibility of SMA s(pinal muscle atrophy). We were hopeful that the ALS was a misdiagnosis, since SMA behaves the same, but is now treatable. Truthfully, this was a longshot, but Dr. Kolb wanted to examine Jacob in person. He explained that Jacob needed to be on one of the available ALS meds for 30 days before we could start the clinical trial. Available medicines were Riluzole, Radicava or Nuedexta.
Dr. Hollinger recommended Riluzole. He felt Jacob would tolerate it much better than the alternatives.
Dr. Kolb explained that his administrator would be in touch with us to schedule our appointments.
03/24/2022
Dr. Kolb emailed me back within 24 hours and requested a live call with us on Friday, March 25 to discuss our options.
