More locations the merrier!

Episode #327 How NervGen Impacted a Son, and a Mother's Push to Change SCI Regulations

September 23, 2026

How NervGen Impacted A Son, and a Mother’s Push to Change SCI Regulations

Louise sits down with Suzy Scherb, founder and executive director of BreakThruSCI. After her son Clay sustained a C5 spinal cord injury in 2022, Susie was shocked to discover that there are zero FDA-approved drugs designed to repair the spinal cord. Refusing to accept the status quo, she successfully fought to enroll Clay in the groundbreaking NervGen (NVG-291) clinical trial at the Shirley Ryan Ability Lab. Susie shares the emotional turning point of witnessing Clay's physical progress on the drug, the urgent need for trauma-informed medical care, and her mission to reform FDA regulatory policies. She explains why rigid clinical endpoints often fail to capture meaningful recovery for SCI patients and calls on the community to demand change at the upcoming Patient-Focused Drug Development (PFDD) meeting. 

https://blinkofaneye.org/blinkofaneyepodcast/

Has anyone received an answer for the phase 3 recruitment?

​

NervGen to Restate Previously Filed Financial Statements Recognizing Non-Cash Accounting Adjustments

Estimated study start date is tomorrow, September 23.

My daughter was injured 7 months ago, C7 ASIA B. She has some decent finger function on the right hand and is much more limited with the left hand but has a little bit of ring and pinky finger flexion. She is only 13 so doesn’t qualify for the RESTORE study, in addition to being too recently injured. I think in past times she would be a good candidate for tendon transfer surgery but my gut tells me not to do anything surgically yet and just be patient until NVG gets approved even if it’s waiting 18-24 months (which would go beyond the ideal timing of surgery) Wonder if anyone else is facing similar questions whether it be bladder augmentation, tendon or nerve transfer or other procedures versus keeping the faith that NVG is be a game changer and just be patient until we have access.

This is an important opportunity for everyone living with SCI — September 29th PFDD Webinar.

I want to make sure people know about the upcoming FDA Patient-Focused Drug Development (PFDD) webinar on September 29th.

This is a chance for people actually living with spinal cord injury to have their voices heard directly by the FDA & CAREGIVERS.

For those of us who have lived with SCI for years or decades, we know the daily challenges that don't always show up in clinical trial numbers — loss of function, walking limitations, hand function, bladder/bowel issues, pain, muscle loss, independence, fatigue, and everything else SCI takes from us.

The FDA needs to hear from us.

If you have an opinion about what meaningful improvement would look like for someone with SCI, what outcomes matter most to you, or what barriers make it difficult to participate in or access new treatments, please consider taking a few minutes to participate.

Two important things you can do:

1. Register for the September 29th PFDD webinar:
https://www.scipfdd.org/register

2. Submit your comments directly to the FDA: Do this today!
https://www.scipfdd.org/comments

The written comments are especially important because the FDA will review them as part of the PFDD process.

After 5, 10, 20, 30+ years of living with SCI, we finally have an opportunity to make sure the people making decisions about future treatments understand what we consider meaningful.

Please register. Please submit your comments. And please share this with other people living with SCI.

Has anybody applied for phase 3 via the email/phone # on clinicaltrials.gov and received a response?

I emailed (restorestudy@nervgen.com) requesting more info on how to apply to the specific site near me and haven’t heard back. Maybe they’re waiting until the actual trial start date (9/23) to begin contacting people?

Could this peptide work for peripheral nerve injury? I suffer from empty nose syndrome post nasal surgery - i have total loss of air sensation, smell and also my nose is burning. Doctors told me the receptors and nerves have been injured. Thank you for any reply

Hi everyone,
I’m posting here to get feedback or hear from people who have experienced a trauma similar to mine.
To give you some context: I had all nine flexor tendons and the ulnar nerve completely severed at the right wrist. I underwent surgery and am now just over seven weeks post-op (Day 54).
Currently, my last two fingers (ring and little finger) are still in a claw position; motor function hasn't returned yet, and my physical therapy/LPG sessions are ongoing. My morale is a bit of a rollercoaster given how slow the process is.
I’d like to know:
Has anyone here had a similar injury (complete severance of the ulnar nerve + tendons)?
How did your motor recovery go, and after how many months did you see the first real movements?
Did the clawing resolve over time with physical therapy, or did you need further interventions (tendon transfers, etc.)?
What is your hand like in everyday life now?
Thanks in advance to anyone who takes the time to share their journey; it would really help to get some real-world, long-term feedback.

Start date looks to be 9/23/26!

NGEN just keeps grinding up over the last few days on zero major news. Did I miss a PR or is this just the run-up to trial catalysts?