So, to correct this oversight, the report in all it's 13-page glory is attached below along with the introduction and summary. It was inspiring to visit with everyone at RIRC. They are certain and steadfast in their work. Quite a juxapostion between this post and my other recent post on suicide.
For many with severe disability the two ends of this spectrum are so much closer and entwined than others might think.
Remember, the report below was created for an audience of well-informed people with SCI. If you have any questions, if any acronyms are troublesome, let me know and I'll clarify. Happy reading.
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Attached is the report of our trip to the Reeve-Irvine Research Center and Dr. Keirstead’s lab. It is 13 pages long and quite detailed. I’ll give a bullet point summary at the end of this post.
This has been a labor of love. Brian needs total credit for the report. My original summary of the visit was a chatty narrative. Brian’s pre-med background made him perfect for reorganizing and more thoroughly reporting the science behind the discoveries. The final report is 90% Brian, 10% me. No wonder I keep scrambling the letters of his name and typing “Brain” LOL. As you read this 13-page missive, bear in mind that Brian is C-6/7, he typed the entire report one key at a time with a pencil tip. That’s how important this message is to him -- and to me.
I hope I speak for everyone on the lab trip when I say that we’ve been riding a high ever since we stepped into the RIRC. Once again, I found myself holding back tears of joy and excitement during our briefing. Sitting at a table with Maura Hofstadter and Hans Keirstead as he casually yet earnestly lays out his plan for “curing” people with SCI is electrifying.
RIRC hosts an annual meeting that is open to the public. This year’s dates are March 11 -13. For everyone west of the Mississippi that can’t afford a ticket to DC for W2W, try to make this event. It’s a fabulous opportunity to meet Hans, Maura and other scientists working on our behalf and hear first-hand about their work.
There’s a quote that I used to have pinned to my bulletin board before I was injured. It seems apropos now: "At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done, then it is done and all the world wonders why it was not done centuries ago." Frances Hodgson Burnett.
We’re just about there, to that place where everyone will wonder why it took so damned long to figure this thing out. In a very short time, the Kevin Everett’s of the world (people who regain complete function after a devastating SCI) won’t be news. It will be a wonderful day when there are fewer and fewer new members to CareCure.
I, like many others here have worried that us “chronics’” were going to be forgotten once “acutes” were treatable. I don’t worry about that any more. Twice I have sat with Hans Keirstead and looked into his eyes as he talks about treatments for chronics. It won’t matter how old the injury is, Hans is known to say. Even if our injuries are ten, twenty, forty+ years post, this treatment will return function.
I find myself daydreaming of hiking my favorite mountain again. I’ve been looking at cute shoes. I’ve been dreaming again; that’s something I shut off with my injury. I have HOPE. Another emotion I have not allowed post-injury.
Giddy, giggly HOPE -- backed by facts.
I will walk again. I will pee on my own again. I will feel the sand between my toes again. And, I will, as I have always dreamed, dance DANCE DANCE at my son’s wedding.
Here are those bullet points….
* The Reeve-Irvine Research Center (RIRC) has treatments in development that address all 3 phases of SCI; acute, sub-acute and chronic. Since SCI represents a population too small for drug companies to consider profitable, RIRC scientists, like Dr. Hans Keirstead, find characteristics that SCI has in common with other conditions. By grouping these conditions together, 2 important goals can be achieved for people with SCI:
o Create a large enough population to be profitable to big pharma;
o Shorten the trial length of each treatment. Instead of following a person with SCI for 10 – 20 years or more for data, they can use shorter trials in these other conditions.
* Safety studies with IP10 antibodies in ulcerative colitis should report soon. FDA approval for UC will allow this drug to be used off-label in Acute SCI. In animal models, as much as 70% return was noted when IP10 antibodies are given within 6 – 10 hours of SCI.
* In early 2008 Geron is planning to file an IND with the FDA and undertake safety studies using differentiated stem cells that form oligodendrocytes (these remylinate the spinal cord). The Phase I trial will be for people with new SCI, 1-2 weeks post injury.
Multiple studies addressing chronic SCI are underway at the RIRC:
* Animal testing with human embryonic stem cell derived motor neurons is underway. Human clinical trials await FDA approval – those discussions begin January, 2008. The first trials will likely be for infants with SMA-1, and then adults with end-stage ALS. This treatment is also for chronic SCI, without limit to the age of the injury. Decades-old SCIs may benefit from the treatment. The Geron experience taught Dr. Keirstead and team, which is moving the hESC motor neuron therapy forward, a great deal about the FDA approval process and they have been able to streamline their processes to move through the FDA system faster. This will be beneficial to the chronic trials.
* RIRC Director, Oswald Steward, is currently testing FDA approved drugs in chronic cervical SCI models. These drugs were developed for other applications, like heart disease and cancer, but have been found to be neuro-protective in fish models. Dr. Steward is testing 7 drugs now, but has many more ready to go. If any of these show efficacy in rat models, we can very quickly, in a matter of months, go to humans in a Phase II trial because the FDA has already determined them safe.
* Dr. Kim Anderson works with care issues such as sexual dysfunction and the metabolic effects of SCI that make us more prone to diabetes and other conditions. She discussed her current pilot study regarding diabetes in the SCI population.
* We have often talked about how funding is THE obstacle to curative therapies. Dr. Keirstead was careful to point out that funding is not the only issue. FDA approvals also play a pivotal role in how fast or slow a therapy will be tested.
* If FDA approvals go as planned, we can reasonably expect chronic SCI clinical trials in humans in 2-3 years with treatments potentially available in as few as 5 years. These predictions are dependant on several factors: funding; FDA approvals and efficacy in humans to follow previous animal models.
* www.researchforcure.org accepts donations for RIRC and Dr. Keirstead.
* Hopefully, everyone reading this will be inspired to raise funds and awareness for SCI research. Tania Cusack and Dr. Maura Hofstadter are the contacts at RIRC that can help with fundraising and research questions.
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