04/28/2022 Confirmed

 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 Consultation

 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 Records Request

 04/04/2022

Marco Tellez from OSU (Dr Kolb!'s admin) emailed me for Jacob's records from Marshall Health!

03/25/2022 DR KOLB CALL

 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 EMAIL

 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.

03/23/2022 2nd Opinion

 03/23/2022

Dr. Hollinger referred us to Dr. Robert Neel with the University of Cincinnati. Today we drove to Cincinnati Ohio for our meeting with Dr. Neel. He was able to confirm the ALS diagnosis within 20 or 30 minutes of a hands-on examination. Dr. Neil recommended a clinical trial for Jacob. He gave me the emaila clinical trial for Jacob. He gave me the email for Dr. Stephen Kolb of Ohio State University and was going to also give me the information for the University of Kentucky. One or both of those doctors. address for Dr. Stephen Kolb of Ohio State University and he was also going to also give me the information for the doctor at the University of Kentucky. One, or both, of these doctors were believed to be conducting a clinical trial for the exact genetic mutation affecting Jacob. 

I emailed Dr Kolb at OSU before we left Dr Neel's office.

At this point, Jacob is using a cane for assisted walking in an attempt to offset his severe limp.

03/20/2022 Winfield Baptist Church

 03/20/2022

We made the decision to announce our diagnosis in church today. We had upcoming appointments, one of which was to be a second opinion, so getting our church family behind us in prayer was our first priority

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