WEBVTT
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It's July 7th, and we have a lot to talk about.
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The Americans with Disabilities Act ensures that people living with disabilities
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receive reasonable accommodation at their job.
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That law also applies to students attending most colleges and universities.
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And the ADA doesn't limit itself to physical disabilities. It's often applied
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to those invisible disabilities as well.
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Britt Neff is the access specialist at the University of Washington School of
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Law, and she's joining me in today's episode to explain how the process of accommodation
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works for college students who are living with MS.
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But before we get to my conversation with Britt, there are a few other things
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that you should know about.
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Over the years, the available disease-modifying therapies have done an increasingly
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good job at pumping the brakes on the immune system to prevent or at least slow
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down new myelin damage in someone living with MS.
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But what about repairing the damage that's already been done?
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Because myelin repair, or remyelination, carries with it the promise of restoring
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lost function, that question has made remyelination a very hot topic among MS
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researchers and among people who are living with MS.
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Now the FDA has given the green light to biotech company Phenotherapeutics to
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start human clinical trials on their experimental oral remyelination therapy, PTD-802.
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PTD-802 targets a specific protein in the brain called GPR-17,
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which, if you aren't a neurobiologist, might sound more like a droid from Star Wars.
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So let's break down this protein in plain English and see what makes it a very
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attractive target to a scientist working on remyelination.
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Think of the brain of someone living with MS like a construction site,
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and the job is to repair damaged myelin.
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That protective coating around your nerves.
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Your central nervous system has a crew of baby cells called oligodendrocyte
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precursor cells, or OPCs,
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whose sole job is to grow up, mature, and wrap new insulation,
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new myelin, around those damaged nerves.
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Everyone starts out with this capability, but that process eventually stops
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working for people with MS.
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Now, GPR-17 is a protein that acts like a cellular brake pedal on these baby cells, those OPCs.
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Under normal conditions, GPR-17 tells these cells, don't grow up just yet, wait until we need you.
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But in an MS brain, because of ongoing inflammation, that GPR-17 brake pedal gets stuck to the floor.
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The baby cells can't mature into the cells that normally repair damage in the
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central nervous system.
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In other words, the construction crew stays on the bench, and that myelin never gets repaired.
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What makes this new drug, PTD-802, so unique is that it's an antagonist,
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which is a fancy science word for a blocker.
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It steps in and wedges itself under that stuck brake pedal, lifting it up.
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And by blocking that GPR17 protein, it lets those baby cells finally grow up
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into mature adult cells that can get to work rebuilding the myelin sheath.
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That's the theory of how PTD802 should work. But we shouldn't get ahead of ourselves.
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This FDA clearance is for a phase 1 clinical trial.
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That means scientists are first testing it in healthy volunteers to make sure
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that it's safe before they test how well it actually repairs myelin in people living with MS.
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It's the very first step on a long road, but it represents a massive leap forward
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from just managing MS inflammation toward actually healing the central nervous system.
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You can be sure we'll be tracking this trial closely as the work gets underway. way.
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If you'd like to learn more about Phenotherapeutics, the company behind PTD-802,
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you'll find a link in today's show notes.
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Results of a recently published study provide some reassuring news about a question
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that I know has caused some anxiety for many of you, and honestly,
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for a lot of clinicians, too.
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We're talking about vaccines, specifically the MMR, that's the measles,
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mumps, and rubella vaccine, and the chickenpox vaccine.
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Both of these are what we call live attenuated vaccines.
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That means they use a tiny weakened version of the actual virus to teach your
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immune system how to fight it.
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And because they provoke a strong immune response, there's been a long-standing
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worry in the MS world about whether a live vaccine could rev up the immune system
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so much that it actually triggers an MS relapse.
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And because of this fear, a lot of people face vaccine hesitancy,
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especially when they're told they need to get these shots before starting an
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immunosuppressive disease-modifying therapy.
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Well, a team of researchers in Spain decided to get some hard data.
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They tracked 369 people with MS.
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About a third of them received the MMR or chickenpox vaccine because they weren't
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yet immune to chickenpox or mumps, while the rest of the study participants
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had already developed immunity, so they served as a control group.
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The researchers followed everyone for a full year. Are you ready for the results?
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There was absolutely no evidence that getting these vaccinations increased the risk of an MS relapse.
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The numbers were completely stable between the vaccinated and unvaccinated groups.
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In fact, the researchers took it a step further and looked at MRI scans for
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a subset of the study participants.
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They found zero increase in inflammatory activity after the vaccinations.
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On the MRIs, there were actually fewer signs of active inflammation after the
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vaccination than before.
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So what does this mean for you? Well, it means these vaccines do exactly what they're supposed to do.
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They protect you from dangerous infections without awakening your MS.
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The results of this study fully support the current guidelines that say you
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should get checked and fully immunized against measles and chickenpox before starting a new DMT.
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So if your neurologist brings this up at your next appointment,
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you can look at the data and feel confident moving forward.
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And if you'd like to review that data, you'll find a link in today's show notes.
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Thanks to the efficacy of newer medications and earlier treatment,
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people with MS are living longer than ever before.
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So, let's talk about a question that a lot of long-time listeners wonder about
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as they transition into a new stage of life with MS.
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Can I ever stop taking my disease-modifying therapy?
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As we get older, our immune systems naturally change and slow down.
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This process is called immunosenescence.
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Because of this, MS relapses generally become much less common after the age of 60.
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At the same time, the risks associated with disease-modifying therapies,
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like serious infection, those risks tend to go up as we age.
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It leaves a lot of people wondering if the risks of staying on a treatment start
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to outweigh the benefits.
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Researchers at the Cleveland Clinic tracked 600 MS patients who were all over the age of 60.
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About a third of them chose to stay on their DMTs, while the other two-thirds
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stopped taking them, usually in their mid-60s.
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The research team followed these folks for a median average of 10 and a half
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years. That's a tremendous amount of data.
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And here's the big takeaway. Over that entire decade of follow-up,
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only 3.3% of all the patients experienced a relapse after the age of 60,
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and there was absolutely no statistically significant difference in relapse
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risk between the people who stayed on their meds and the people who stopped.
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For the vast majority of older adults, the clinical flares completely quieted
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down, regardless of their treatment status.
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But, and yes, there's a but here, the study brought to light an important nuance
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that shouldn't be ignored.
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While clinical relapses were incredibly rare, the researchers found that new
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activity on MRI scans was actually quite common.
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Roughly a third of the patients in both groups showed new T2 lesions on their
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routine MRI scans over time. So what does that mean?
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Honestly, the researchers admit they don't fully know if these new lesions translate
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into progression or symptoms down the road, or if they're just a byproduct of aging with MS.
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Clearly, there is more research required to answer this very important question.
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But based on the outcome of this study, stopping a DMT after age 60 appears
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to be safe when it comes to preventing relapses.
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But it's not a set-it-and-forget-it situation.
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If you and your neurologist decide to transition off your treatment,
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you'll still need to keep up with regular MRI monitoring to see what's happening under the surface.
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It's an important conversation starter for your next neurology appointment,
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especially if you're approaching that 60-plus milestone.
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In the meantime, if you'd like to review the details of this study,
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you'll find that link in today's show notes.
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We know that cognitive changes, things like brain fog, trouble multitasking,
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or memory slip-ups, are incredibly common among people living with MS.
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But one of the biggest frustrations for both patients and their neurologists
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has always been the unpredictability.
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There isn't a reliable way to examine someone early on and say,
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here is your specific risk for cognitive decline over the next few years.
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Well, results of a new study might be changing that narrative.
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A team of researchers in Italy developed a multimodal AI model designed to predict cognitive worsening.
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Now, multimodal just means the AI doesn't look at only one piece of the puzzle.
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It digests a whole mix of data collected right at the start.
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Standard brain MRIs, detailed structural brain measurements,
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demographic information like age, clinical scores like disability levels,
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and what we call cognitive reserve,
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which is essentially the brain's baseline resiliency to damage.
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They tested this AI model on a group of adults with MS over a span of about
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three and a half years, and the accuracy of this tool was impressive.
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The AI model was able to correctly predict which patients would experience cognitive
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decline and which would remain stable in about 90% of the cases.
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And here's what makes this study a little special.
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The researchers didn't us build a black box AI that spits out a prediction without explaining why.
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They used what are called explainability tools so they could see exactly what
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data points the AI valued most.
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And the top indicators the AI used to predict a higher risk of cognitive decline
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were the loss of volume in the cortical gray matter, a person's age,
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shrinking in specific memory-centric regions of the brain called the thalamus
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and the hippocampus, a higher burden of MS lesions and a lower level of cognitive reserve.
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Besides the demonstrated 90% accuracy, what makes this particularly encouraging
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for the MS community is the shift toward proactive personalized medicine.
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If a tool like this can be integrated into routine clinical care,
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it means neurologists could flag high-risk patients years before noticeable
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cognitive decline sets in.
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That opens the door for early aggressive interventions, whether that means adjusting
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a disease-modifying therapy, starting targeted cognitive rehabilitation,
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or focusing heavily on brain-healthy lifestyle modifications.
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It's truly a leap forward in taking the guesswork out of cognitive monitoring.
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And as AI continues to impact every facet of healthcare, it's a trend we're
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going to keep a close eye on.
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If you'd like to review the details of this study, well, you'll find that link in today's show notes.
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We've covered some really encouraging news in this episode, from the first human
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trial of an oral therapy that could repair myelin and restore lost function,
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to the evidence-based safety of important vaccines,
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to AI being able to proactively predict MS-related cognitive issues years before
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an individual experiences those issues.
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There's a lot to be excited about. At the same time, people living with MS need
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to know how to live their best lives and enjoy the best life experiences now.
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And there probably isn't a life experience that shines brighter than the time
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someone spends attending college.
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Of course, the classes are important, but so is everything else that's part
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of the college experience.
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And if you're a student living with MS, you don't have to miss that experience.
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In fact, your college experience can be tremendously enhanced by knowing how
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to ask for the right accommodation.
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In a moment, my guest, Britt Neff, is going to join me to explain exactly what
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a college student with MS can expect in the way of accommodation and how to
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make sure that accommodation is in place by the time classes begin.
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The Americans with Disabilities Act ensures that people living with disabilities
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receive reasonable accommodation at their job.
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That law also applies to most colleges and universities.
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And today, Britt Neff, the Access Specialist at the University of Washington
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School of Law, is joining me to discuss how the process of accommodation works for college students.
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Welcome to the podcast, Britt.
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Thank you so much.
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Can you describe your role as an Access Specialist? and how you interface between
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the Disability Resources for Students Office and the UW School of Law?
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Sure. So my role is to work with students and faculty.
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So first I'll meet with the student. We'll have a discussion of the impact of
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their disability. We'll discuss their documentation.
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We'll go over accommodations. And then we will discuss what the process is for
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utilizing those accommodations.
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All of the accommodations are going to be based on,
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the impact of the disability and whether or not those accommodations actually
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provide access to the program.
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But at the same time, I'm also here to answer questions for faculty.
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If they have questions about how to make a particular accommodation work in
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their classroom, I'm here to help them think through that or think through effective alternatives.
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If we really come to a point where they feel an accommodation would fundamentally
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alter the learning outcomes of their class.
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So that's my role is to kind of be the mediator.
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Federal law requires colleges to provide reasonable accommodation to students
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with documented disabilities.
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What does that term reasonable accommodation mean?
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Yeah, a reasonable accommodation is an adjustment to a program or a class or
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sometimes a piece of equipment that would allow,
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or adaptive technology, that would allow the student to access the content of
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the class and effectively demonstrate their knowledge of the material.
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So that's what an effective accommodation is.
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It's also a legal term because once we actually put it in place,
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then the university is required to provide it and or consider effective alternatives
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to allow the student to participate in the program.
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So what are the first steps a student living with MS should take to begin the
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process of requesting accommodation?
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So the first process would be to contact the Disability Services Office and,
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complete an application, typically, and notify the university and the disability office,
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mainly specifically the disability office, the need for an accommodation.
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And then begin what we call an interactive process, which is to discuss with the student,
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what their needs are, their documentation, and what accommodations might be
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appropriate based on the program that they're in.
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So is there a point in this process where the student living with MS should
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be discussing their needs with their professors?
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I guess my advice would always be to...
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Talk with the Disability Services Office and begin that conversation.
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Students can discuss with their professors their disability as they see fit.
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Students never require to disclose the nature of their disability,
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except when discussing it with the Disability Services Office.
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They're not required to give that information to their professors,
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because it's the job of the Disability Services Office to have that conversation,
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evaluate the documentation, and discuss the accommodations.
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I think it is important for students, once the accommodations are set up,
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to have a conversation with their faculty member about the accommodations and how they,
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might be implemented in their class. And so that's really the important piece
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of communication, especially when we're talking potentially about something
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like a disability-related absence.
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Communication is key because the professor needs to know what to expect to the
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greatest extent possible because
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they also need to plan and they have obligations as well to the class,