WEBVTT
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It's October 13th, and we have a lot to talk about.
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When you build a career in a demanding, high-stakes corporate environment,
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the expectations around stamina, pace, and presence can feel relentless.
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What happens when you're diagnosed with a chronic, unpredictable condition just
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as your career is taking off?
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Well, that's exactly what happened to my guest, Dana Foote, National Managing
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Partner for Audit and Assurance Operations at KPMG US.
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Dana is joining me today to share her experience that began as a young auditor
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at a Big Four accounting organization by hiding her symptoms and keeping her MS to herself,
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all the way to leading an employee resource group focused on employees with disabilities.
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Doing all that while rising to National Managing Partner, managing a multi-billion
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dollar national audit practice.
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But before we get to my conversation with Dana, there are a few other things
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that you should know about.
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A few months ago, in episode 461, I shared that drug manufacturer Roche had
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submitted the very positive clinical trial results for fenebrutinib to the FDA for approval.
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The FDA has officially accepted Roche's application to review fenebrutinib for
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both relapsing MS and primary progressive MS,
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and they've granted it priority review, which shortens the FDA's standard 10-month
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review cycle to just six months, putting an approval decision on the calendar
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for late March or early April.
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Now, if approved, fenebrutinib would mark two important milestones.
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It would be the first BTK inhibitor approved to treat both relapsing forms of
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MS and primary progressive MS.
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And it would introduce the first high-efficacy oral option specifically authorized
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for primary progressive MS,
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giving people living with MS the convenience of taking a daily pill instead
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of going through all the logistics involved in scheduling an infusion.
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So let's talk about how this medication works.
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MS involves two separate types of nerve damage.
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There are acute relapses driven by flare-ups in the immune system,
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but there's also the slower, compartmentalized inflammation deep inside the
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central nervous system that silently drives long-term disability progression
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in the absence of relapses.
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Phenobrutinib blocks an enzyme called Bruton's tyrosine kinase,
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or BTK, which is necessary to the survival and function of B cells and microglia.
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By blocking this enzyme and shutting down this pathway, fenobrutinib targets
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both those acute flare-ups and that chronic brain inflammation simultaneously.
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Now Roche backed its FDA filing with findings from three phase 3 trials.
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Two clinical trials tested fenobrutinib for relapsing forms of MS against Obagio
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across nearly 1,500 adults, and fenobrutinib cut the annualized relapse rate by more than 50%.
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That translates to roughly one relapse every 17 years.
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It also reduced new or enlarging MRI lesions by over 70% and demonstrated a
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positive trend toward slowing disability accumulation.
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The clinical trial that tested fenebrutinib for primary progressive MS evaluated
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fenebrutinib directly against the current standard of care, Ocrevus.
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And fenebrutinib performed at least as well, showing a 12% reduction in the
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risk of confirmed disability progression.
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And this benefit was observed even among trial participants with primary progressive
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MS who showed no active MRI inflammation.
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Now, that's a group that historically hasn't gained much from traditional B-cell depleting infusions.
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As spring approaches, you can be sure we'll be following the FDA's decision,
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and you'll be among the first to hear it.
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Meanwhile, if you'd like to hear more about the fenebrutinib clinical trials
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from one of the principal investigators, I'll invite you to check out my conversation
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with Dr. Jiwon Oh in episode 461 of Real Talk MS.
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And you'll find that link in today's show notes. Thank you.
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The National Multiple Sclerosis Society announced that it was investing $8.9
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million in multi-year funding to support 15 cutting-edge research grants.
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Each of these grants maps directly to the Society's Pathways to Cures roadmap
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that targets three goals that matter most to people living with MS.
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Stopping MS in its tracks, restoring lost function, and ultimately ending the
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disease through prevention.
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These projects represent awards lasting up to three years, funding everything
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from bench science to clinical rehabilitation.
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And I want to point out that these grant applications weren't just evaluated
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by a panel of scientists.
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They were also reviewed by a committee of people living with MS.
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This latest investment is part of the Society's $119.6 million commitment,
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supporting more than 200 active research initiatives worldwide.
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Now, I want to briefly walk you through four standout projects from this new grant cycle.
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One project is aimed at stopping MS by precision reprogramming of B-cells.
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At Seattle's Children's Hospital, Dr. David Rawlings received over $597,000
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to reprogram immune B-cells into a specialized cell therapy.
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And here's why that matters.
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Current disease-modifying therapies broadly suppress the immune system.
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That leaves individuals vulnerable to infections and reduced vaccine responses.
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Dr. Rawling's team is engineering B-cells to affect only the specific harmful
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attacks on myelin while keeping healthy immune defenses intact.
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And they're also planning to test whether these reprogrammed cells can support myelin repair.
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A project focused on restoring lost function is taking place at the Methodist
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Hospital Research Institute in Houston, where Dr.
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Rose Khavari is investigating a treatment called tibial neuromodulation,
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or TNM, to restore bladder function.
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Now, bladder dysfunction impacts up to 80% of the people living with MS,
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and it's one of those symptoms that has a direct connection to your quality of life.
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Dr. Khavari's clinical trial evaluates non-drug at-home nerve stimulation using
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either an FDA-approved wearable sock or a minor implant that stimulates ankle
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nerves connected to the spine.
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Trial participants will receive 12 weeks of therapy alongside advanced MRI brain
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scans to see if retraining these nerve pathways can physically rebuild bladder control.
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Meanwhile, at UT Health Houston, Dr. Stephanie Silveira is leading a randomized
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clinical trial that's focused on restoring lost function through home-based
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exercise training for wheelchair users with MS.
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About a third of the people living with MS use a wheelchair or scooter,
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but these individuals are routinely excluded from clinical trials.
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Dr. Silveira's study will enroll 100 participants into 16 weeks of virtual behavioral coaching,
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testing whether structured home workouts can boost upper body function,
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improve daily living, and preserve their independence.
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And under the category of ending MS, Dr. Claudia Nobrega at the University of
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Minho in Portugal is spearheading the Harness MS study.
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Now, the Epstein-Barr virus, or EBV, has been identified as a necessary trigger for MS.
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And viral reactivation of EBV has been linked to flares and disability progression.
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The Harness MS study uses receptor-targeted T cells to keep the Epstein-Barr
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virus permanently suppressed without provoking autoimmune attacks,
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which could be a pathway toward prevention and long-term remission.
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We'll keep you updated on these and all of the MS research that's underway as
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these projects move forward.
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In recent years, MS clinical research has begun focusing on Confirmed Disability Improvement, or CDI.
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This means researchers are no longer just asking whether a disease-modifying
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therapy can slow down progression.
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They want to know if it can help people regain function that's been lost to MS.
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A new study published out of the German Multiple Sclerosis Registry reveals
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that non-pharmacological care, specifically ongoing physical therapy,
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plays a critical role in whether people experience real, measurable disability improvements.
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In this study, investigators analyzed data from more than 45,000 patient records
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in the German MS registry.
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To isolate the true effect of physical therapy, they used what's called propensity
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score matching to compare 362 people with MS who received continuous physical
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therapy for at least six months
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against 362 matched people with MS
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who had no physical therapy.
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Both groups were balanced across age, their baseline, expanded disability status
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scale or EDSS scores, how long they had MS, and the disease-modifying therapy they were using.
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They were followed for up to eight years, and the data showed a significant
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advantage for those people receiving regular physical therapy.
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Over that eight-year follow-up period, 16.3% of the participants receiving continuous
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physical therapy achieved three-month confirmed disability improvement,
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compared to 11.1% of those who had not received any physical therapy.
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And the benefit was most pronounced among individuals with a baseline EDSS score of 4 or higher.
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In this group, where mobility and walking limitations are more prominent,
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25.3% of those receiving physical therapy saw confirmed disability improvement
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compared to just 11.5% in the non-physical therapy group.
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People with MS who were age 48 and older also experienced a significant boost
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in confirmed disability improvement when they engaged in physical therapy.
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So how does this happen? Well, the middle ranges of the EDSS scale are largely
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driven by walking speed, balance, and lower limb endurance.
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And these are the exact functional deficits that are targeted by personalized
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physical therapy programs.
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Now, I want to point out that because this was an observational registry study
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rather than a randomized controlled trial, it can't establish direct causality,
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and registry entries don't capture individual exercise intensity or home workout habits.
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Still, this strong real-world evidence reminds us that structured,
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ongoing physical therapy is not just about symptom maintenance.
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It can be an active driver of functional recovery, particularly for older adults
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and those individuals navigating moderate disability.
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And it's important that researchers take these findings into consideration.
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You know, most phase three drug trials evaluating disability improvement don't
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track or control for concurrent physical therapy.
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So if trial participants in one arm use physical therapy more than another,
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well, that rehabilitation effect is going to blur or perhaps exaggerate the
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perceived benefit of whatever drug is being studied.
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Now, based on these findings, there are a couple of things you may want to keep in mind.
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At your next clinical appointment, discuss a referral for continuous,
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individualized outpatient physical therapy tailored to gait,
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lower limb strength, and balance rather than waiting for PT as a response to a relapse.
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And ask your physical therapist to record objective baselines like the timed
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25-foot walk or two-minute walk test.
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And track those times every three to six months to evaluate whether your rehabilitation
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program is driving real, measurable mobility gains.
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Now, if you'd like to review the details of this study, you'll find that link in today's show notes.
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Next week, I'll be in Toronto, Canada for the largest MS research conference in the world.
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The joint meeting of the America's Committee for Treatment and Research in MS
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and the European Committee for Treatment and Research in MS,
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or MS Toronto 2026, begins Wednesday, October 21st.
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And part of the conference is especially for people affected by MS.
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Patient Community Day is a live, in-person, and online event where you'll see
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some of the top MS experts in the world explaining the research that was presented
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at this joint meeting in easy-to-understand language.
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You'll even be able to submit your own questions and have them answered by some
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of the best and brightest MS researchers in the world.
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I hope you'll take a moment to visit ectrimspatientcommunity.eu and register
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for what I know is going to be an amazing program, and you'll find that link in today's show notes.
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Sometimes, I step back from all the science and consider the human side of MS.
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I don't think I'll ever forget seeing my wife burst into tears when she received her MS diagnosis.
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And I think she probably experienced that same mix of shock and fear that a
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lot of people experience.
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You immediately wonder how this chronic condition is going to impact your future,
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your family, your job, everything.
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And your imagination tends to present you with the worst possible outcomes.
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Outcomes. Dana Foote was a young auditor at one of the big four accounting organizations
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when she was diagnosed with MS.
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And even when it meant hiding IV steroid bags up her sleeves at the office, Dana persevered.
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And today she manages a multi-billion dollar audit practice as national managing
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partner for audit and assurance operations at KPMG US.
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In a moment, we'll meet my guest, Dana Foote.
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When you build a career in a demanding, high-stakes corporate environment,
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the expectations around stamina, pace, and presence can feel relentless.
00:15:50.450 --> 00:15:54.490
But what happens when you're diagnosed with a chronic, unpredictable condition
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just as your career is taking off?
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That's exactly what happened to my guest, Dana Foote, National Managing Partner
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for Audit and Assurance Operations at KPMG US. Welcome to the podcast, Dana.
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Thank you, Jon. Great to be here.
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When you were diagnosed with MS early in your career, what were the professional
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uncertainties that first ran through your mind?
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I was just two years into my career in 1998 when I was diagnosed with MS.
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And I think a lot of uncertainty ranged in my mind of, what is this?
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Me at MS in and of itself is uncertain. I had visions of wheelchairs and inability to do my job.
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I did travel quite a bit for work early on, so I truly believed it was the death sentence to my career.
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If someone is working and they are diagnosed with MS, one of the initial thoughts
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they do have is about disclosure, and it's usually a scary thought.
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I'm curious, how did you decide when and how to disclose your diagnosis?
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When I was first diagnosed, I didn't talk about it. I had one boss,
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immediate boss that I worked with that I knew because I knew him in college.
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So he knew I was going to doctor's appointments and things like that.
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But otherwise, I didn't talk about it with anybody at all and was nervous who
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was going to get in the way of my progression. So I was promoted to partner
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in 2007, so several years after my diagnosis.
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I didn't disclose it broadly until that time after I'd made partner.
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The decision there was I was blessed to be able to be promoted to partner at KPMG.
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And I thought this was my opportunity to lead by example. and thus I made the
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decision to disclose in 2007.
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And how did that feel after several years of not sharing that information and
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then finally being able to? How was that experience for you?
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The experience was good. I'll answer that in a couple of ways, Jon.
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Maybe I'll tell you a little bit about how I went about the disclosure.
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I made that decision like I just talked about, but I heard on a firm-wide meeting
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that they were starting an employee resource group for people with disabilities
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and children with special needs.
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So I raised my hand. I knew the lady that was starting it that was in HR and
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I sent her an email and said, let me know if I can help.
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Next thing I know, she called me and said, yes, we want you to help.
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And by the way, could you co-chair and basically be the co-founder of the group?
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So then I had someone else call me, Laura at HR and saying, Dana,
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we need to make this announcement. And I'm like, oh, I guess that means I need
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to disclose why I want to volunteer.
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So that's when it hit me of this is a big deal. So it was a little overwhelming
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at first to go public with it in such
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A wide ray of everybody hearing it and seeing it. But it really did feel good.
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And it's nice to be able to talk about it more openly now.
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And the other way I would answer the question is, I am happy that I waited a
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while because by the time I disclosed, I felt like I had established myself
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in my profession where I was trusted, I was reliable, people knew I did good work,
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and then I could have the open conversation of what I was battling.
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I have questioned myself, did I wait too long? I waited nine years.
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That is a long time. I'm not saying the right number for anybody by any stretch.
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So maybe I should have gone a little earlier in my career, but I do think some
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level of time to establish yourself if the opportunity presents itself.
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I know MMS is different for everybody.
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I think that is the right decision. It was definitely the right decision for me.
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High-performance business environments often reward long hours and what seems
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like a relentless pace sometimes.
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In those early years post-diagnosis, how did you begin reconciling the unpredictability
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of MS with the demands of an audit career?
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It's difficult, and I'll tell you, I still am challenged by it a little bit today.
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But thankfully, there's a lot of advice out there with the profession,
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with the medical, with medical doctors, with the MS Society and other resources
00:19:52.560 --> 00:19:57.210
there. So taking care of yourself, I think keeping my brain active is really important.
00:19:57.890 --> 00:20:02.040
I think using the medications that are available to us, I'm a huge supporter
00:20:02.040 --> 00:20:05.860
of that. I've been on four or five of the different disease modifying therapies
00:20:05.860 --> 00:20:08.060
that I've gone through over my time with MS.
00:20:08.570 --> 00:20:11.020
I think sleep is important.
00:20:12.000 --> 00:20:14.810
And yes, that is hard when you work in the kind of hours we have.
00:20:14.810 --> 00:20:18.920
So some other things may have to get cut, like being able to be in so many social
00:20:18.920 --> 00:20:21.940
events as all of my friends around home or things like that.
00:20:22.410 --> 00:20:27.120
So sleep is important. Eating right is important. And then some level of exercise.
00:20:27.120 --> 00:20:30.280
I'm not great at that either, but I do try to get some exercise in there.
00:20:30.730 --> 00:20:34.730
So finding ways to do all of that and be a mom is a challenge,
00:20:35.180 --> 00:20:38.290
but you are going to have to give up some things to make that work.
00:20:38.290 --> 00:20:41.310
And taking care of your health has to be a top priority.
00:20:42.800 --> 00:20:46.960
And to that point, how did you approach having conversations with managers and
00:20:46.960 --> 00:20:53.030
teams when your symptoms flared or when you needed to adjust expectations without
00:20:53.030 --> 00:20:55.830
feeling like you were compromising your standing?
00:20:57.760 --> 00:21:01.850
That's another really hard question. The hardest time with my MS in my career
00:21:01.850 --> 00:21:06.640
was while I was having children. So you do have to come off your MS medications
00:21:06.640 --> 00:21:09.100
to try to get pregnant and when you are pregnant.
00:21:09.610 --> 00:21:13.530
And that is when I had the worst of my MS symptoms. Some of that time was when
00:21:13.530 --> 00:21:16.040
I had disclosed, some of it when I had not disclosed.
00:21:18.520 --> 00:21:22.790
So MS, you can kind of blame it on different things. So before I disclosed,
00:21:22.790 --> 00:21:26.680
I always was telling some story, whether I was dizzy at work or tripping or
00:21:26.680 --> 00:21:27.940
just saying I was a klutz.
00:21:28.700 --> 00:21:32.510
I did have, I'm sure some of you can relate to this, but having to have steroid
00:21:32.510 --> 00:21:37.080
treatments to treat your MS, you can get the steroids in that little junk that
00:21:37.080 --> 00:21:41.500
it's like its own little IV pump. And I'd wear a big sleeve and stick it up my sleeve and hide it.
00:21:41.990 --> 00:21:47.010
So lots of little things I did, but it was so refreshing when I finally did
00:21:47.010 --> 00:21:51.380
disclose because I can just tell the truth. And I think be a role model to others.
00:21:51.730 --> 00:21:55.980
You can be successful in your career and manage it and setting those boundaries.
00:21:55.980 --> 00:21:59.320
I mean, I have to have a doctor's appointment, which I have lots of them.
00:21:59.320 --> 00:22:02.850
I'm sure you all can relate to that and managing the disease,
00:22:03.310 --> 00:22:09.030
making that a priority. And I don't try to hide what I'm doing and where I'm going, why I'm doing it.
00:22:09.030 --> 00:22:14.530
Many people worry that an MS diagnosis puts an automatic ceiling on their career progression.
00:22:14.930 --> 00:22:18.100
Now, as you moved up the ranks to national managing partner,
00:22:19.210 --> 00:22:25.840
did living with MS help to shape your leadership style and approach to problem solving in general?
00:22:26.960 --> 00:22:30.520
Absolutely, it did. Maybe just to quickly talk about the ceiling.
00:22:30.990 --> 00:22:35.000
I was worried initially on it. I think I maybe said that at the beginning that
00:22:35.000 --> 00:22:38.620
I had some type of ceiling and still do worry about it today.
00:22:38.620 --> 00:22:42.900
But I think I exhibited that you can overcome those ceilings pretty quickly.
00:22:43.230 --> 00:22:46.870
But has it shaped my ability to be the leader that I am? Absolutely,
00:22:46.870 --> 00:22:49.490
it has. I think there's a lot of empathy there.
00:22:49.790 --> 00:22:54.480
So just knowing how I've had to manage through my disease. My mother-in-law also had MS.
00:22:54.910 --> 00:22:58.470
So I watched my husband work with her and how she managed it.
00:22:58.470 --> 00:23:01.090
She was a lady with a great career. She was a pharmacist.
00:23:01.660 --> 00:23:06.810
So I did have role models in that regard. And so I think just any disability
00:23:06.810 --> 00:23:11.380
that folks have and the people that I manage now are audit practices for four
00:23:11.380 --> 00:23:13.530
and a half billion dollar audit practice here in the U.S.
00:23:13.530 --> 00:23:16.860
So you can imagine I've got a pretty, pretty big group of people that I manage.
00:23:17.390 --> 00:23:21.340
I think I can have a conversation with most of them about different types and
00:23:21.340 --> 00:23:25.140
at least have the empathy with most people with whatever challenge they may
00:23:25.140 --> 00:23:30.460
be encountering. So I can come into those conversations with empathy and I think with some humility.
00:23:31.020 --> 00:23:33.330
And that has, I think, shaped the leader that I am.
00:23:34.910 --> 00:23:40.000
One of the things that keeps people with MS in the workplace is accommodation.
00:23:40.600 --> 00:23:44.570
What accommodations have made the biggest difference in protecting your energy
00:23:44.570 --> 00:23:48.300
and health while allowing you to continue to deliver at such a high level?
00:23:49.190 --> 00:23:54.060
Flexibility. So definitely flexibility in my career. Our job is demanding,
00:23:54.210 --> 00:23:58.150
but can I take time off during the day? If I have a doctor's appointment, yes.
00:23:58.550 --> 00:24:02.610
Can I sleep in if I'm having a rough morning and still manage the calendar? Yes, I can.
00:24:02.630 --> 00:24:06.020
And as long as the work gets done, yes, I might be working into the evening.
00:24:06.020 --> 00:24:08.350
I'm more of an evening person than a morning person.
00:24:08.770 --> 00:24:11.840
So that accommodation is important. Obviously, going through,
00:24:11.840 --> 00:24:15.580
I mentioned that most trouble I had with my MS was during my childbearing years.
00:24:15.580 --> 00:24:19.820
So I had maternity leaves to manage through as well as needing to take time
00:24:19.820 --> 00:24:23.030
away because of my MS problems during that time, especially.
00:24:23.530 --> 00:24:26.380
And having that ability to have that accommodation at work.
00:24:26.810 --> 00:24:31.090
And then the last thing I'll mention, personally, I do travel a lot for work.
00:24:31.490 --> 00:24:35.400
And this may seem interesting, but I love my four wheel suitcase.
00:24:35.400 --> 00:24:39.760
So it is my walker in disguise as I'm going through the airport and I don't
00:24:39.760 --> 00:24:43.440
let anybody help me with my luggage. So I definitely am using my suitcase as
00:24:43.440 --> 00:24:46.900
my walker in disguise. So those are the types of things that help me.
00:24:47.310 --> 00:24:51.520
But on a more broad basis, one of the things when I first started our disability
00:24:51.520 --> 00:24:55.500
network at KPMG, which we now call AIM, which stands for Abilities in Motion.
00:24:56.450 --> 00:25:00.660
My strategic plan for starting that was, I call them the two A's,
00:25:00.660 --> 00:25:02.410
so accommodations and awareness.
00:25:02.410 --> 00:25:07.180
So awareness is big. We just talked about that, making sure the stigma of talking
00:25:07.180 --> 00:25:12.130
about having MS was not something people faced as much. And we had an open and caring environment.
00:25:12.610 --> 00:25:17.050
But accommodations was the other one. So I did establish a reasonable accommodations process.
00:25:17.050 --> 00:25:20.350
So anybody that needed an accommodation work, whether it was a different type
00:25:20.540 --> 00:25:24.620
of computer, whether it was a large screen for visual impairments,
00:25:24.620 --> 00:25:26.260
It's anything they could just go
00:25:26.810 --> 00:25:30.800
click the button, no questions asked, anonymous, if it was any kind of technology
00:25:30.800 --> 00:25:32.080
thing that could support them.
00:25:32.620 --> 00:25:36.320
If it was more personalized, whether you need to go on a part-time work arrangement
00:25:36.320 --> 00:25:40.740
or things of that nature, there was a process to easily go request that and
00:25:40.740 --> 00:25:42.080
work with somebody that can help you.
00:25:42.080 --> 00:25:46.050
So I am pretty proud that we got that process in place. It's still in process
00:25:46.050 --> 00:25:49.910
today at KPMG. They had some modifications and enhancements along the way,
00:25:50.360 --> 00:25:53.720
but it started with our AIM group back in the late 2000s.
00:25:55.150 --> 00:25:58.800
I think you've already started to answer my next question. I was curious about
00:25:58.800 --> 00:26:03.820
how your lived experience has influenced how you view inclusive culture,
00:26:04.180 --> 00:26:08.060
disability representation, and employee support at KPMG.
00:26:09.600 --> 00:26:13.310
I think it has influenced it. And being a woman, too, that's another diversity
00:26:13.310 --> 00:26:15.580
component, for sure. And how it helped.
00:26:15.980 --> 00:26:20.100
In fact, where I am today is I'm in our Denver office visiting with a lot of
00:26:20.100 --> 00:26:24.370
the ladies here in Denver and just had this conversation from a female perspective.
00:26:24.800 --> 00:26:30.010
So I think it is important to lead by example and tell my story about having
00:26:30.010 --> 00:26:34.870
two daughters and balancing those demands in the workplace, balancing the demands
00:26:34.870 --> 00:26:36.420
in the workplace of having MS,
00:26:36.920 --> 00:26:40.010
I do think has contributed to a welcoming culture at KPMG.
00:26:41.210 --> 00:26:46.440
And I do love my job. I'm not just saying that I'm surrounded by wonderful bosses,
00:26:46.440 --> 00:26:49.890
wonderful peers, wonderful subordinates, wonderful clients.
00:26:50.210 --> 00:26:54.700
So together with all of that, I feel very blessed. And as I mentioned clients,
00:26:54.700 --> 00:26:58.020
I've seen companies that are very good at that and had great culture around
00:26:58.020 --> 00:26:59.990
that openness, and I've seen some that aren't.
00:26:59.990 --> 00:27:05.070
So I think for those of you listening today that do have MS and are thinking
00:27:05.070 --> 00:27:10.640
about disclosure, when you're ready, be that advocate and help create that culture at your workplace.
00:27:10.640 --> 00:27:14.900
Because I do think those welcome opening cultures like that can contribute to
00:27:14.900 --> 00:27:16.150
really successful companies.
00:27:16.970 --> 00:27:21.740
Resilience can sometimes be defined as simply pushing through.
00:27:22.380 --> 00:27:27.140
Has your definition of resilience changed over the years as you've managed a
00:27:27.140 --> 00:27:31.250
progressive chronic condition alongside high stakes responsibilities?
00:27:32.210 --> 00:27:36.480
I'm sure it's been enhanced over time because obviously my role has changed
00:27:36.480 --> 00:27:37.910
and I've continued to have increased
00:27:37.910 --> 00:27:41.890
responsibilities, but I think that my approach to it hasn't changed.
00:27:43.150 --> 00:27:46.410
I am somebody that always looks through the windshield, not the rearview mirror.
00:27:46.410 --> 00:27:51.160
There's going to be hurdles in life and definitely in life with managing MS
00:27:51.670 --> 00:27:55.930
or any other type of disease. So I try to look out the windshield.
00:27:55.930 --> 00:27:58.560
Don't look out the rearview mirror. Don't second guess what's happened in the
00:27:58.560 --> 00:28:01.390
past. There's lots of uncertainty that comes with MS.
00:28:01.970 --> 00:28:07.140
So I try to not focus on what I can't control and instead focus on what I can control.
00:28:07.980 --> 00:28:12.680
And I do think, I'll use the analogy of the cat with nine lives.
00:28:12.680 --> 00:28:16.420
I do feel like I'm the cat with nine lives because I have continued to hit those
00:28:16.790 --> 00:28:18.580
speed bumps and always overcome them.
00:28:18.590 --> 00:28:23.110
And I think it has made me a stronger person with every speed bump that I've hit.
00:28:23.490 --> 00:28:27.330
So I guess I would tell you resilience is important and it's not just one of
00:28:27.330 --> 00:28:30.270
those keep on keeping on, but learn from those experiences.
00:28:31.360 --> 00:28:33.610
But don't focus on looking in that rearview mirror either.
00:28:34.630 --> 00:28:42.110
I think so much of our conversation can be classified as great advice for someone who's been diagnosed.
00:28:42.500 --> 00:28:46.770
Do you have any specific advice to give to a professional who's been newly diagnosed
00:28:46.770 --> 00:28:52.210
with MS, who's listening to this conversation, feeling a little terrified about
00:28:52.210 --> 00:28:55.020
what it means for their career trajectory today?
00:28:55.510 --> 00:28:58.930
I would say positive attitude is probably the best way to look at it.
00:28:58.930 --> 00:29:03.180
And I know that is so hard to say when you're faced with that kind of message.
00:29:03.650 --> 00:29:09.850
But I know there was many and there still is days of tears but at the beginning
00:29:09.850 --> 00:29:13.250
there was a lot of days of tears and thinking the world had come to an end but
00:29:13.660 --> 00:29:17.660
surround yourself with people you trust that you can talk to whether it's through
00:29:17.660 --> 00:29:21.070
the MS Society whether it's listening to some of these podcasts whether it's
00:29:21.480 --> 00:29:23.970
someone you trust at work with family and friends
00:29:24.400 --> 00:29:29.400
but getting folks around you that can help you think through it MS is different
00:29:29.400 --> 00:29:33.560
for everybody and I think that's something And I try to make sure people understand.
00:29:33.560 --> 00:29:36.450
I think I do have people at my work that look at me and they're like,
00:29:36.450 --> 00:29:41.080
she's the national managing partner. She flies around the countries in different
00:29:41.080 --> 00:29:44.980
places all the time, has a hard job. She has MS. She can't have MS. What does that mean?
00:29:45.560 --> 00:29:48.600
There's a lot behind the covers. And I think a lot of people with MS,
00:29:48.600 --> 00:29:52.570
you know, there's a lot behind the covers, right? Take on that challenge.
00:29:52.570 --> 00:29:55.070
Tell your story to the extent you're comfortable doing it.
00:29:55.650 --> 00:29:59.490
And know that those challenges are going to come, but surround yourself with
00:29:59.490 --> 00:30:03.820
love and people that can help you along the way, which has been my strategy.
00:30:04.240 --> 00:30:08.380
Don't compare yourself to just the person next to you that has MS or someone
00:30:08.380 --> 00:30:11.860
else you know that has MS because it is different in every circumstance and
00:30:11.860 --> 00:30:15.670
help those around you that have MS. That's one thing that's been really good for me.
00:30:16.170 --> 00:30:20.510
I served on the MS Society chapter boards. I served on the National Board and
00:30:20.770 --> 00:30:25.060
I loved all those experiences because I was surrounded by people that had MS
00:30:25.060 --> 00:30:28.160
or had loved ones with MS. And so we helped each other.
00:30:28.760 --> 00:30:32.810
So just relationships and networks, I think would be my takeaway to everybody.
00:30:33.760 --> 00:30:38.550
For corporate leaders and managers who want to support employees managing chronic
00:30:38.550 --> 00:30:44.050
or invisible illnesses, do you see something that they typically get wrong?
00:30:44.200 --> 00:30:48.010
And if you do, what should they be thinking of instead?
00:30:49.020 --> 00:30:52.370
I pull up on my own experiences there. So the things I think they get wrong
00:30:52.370 --> 00:30:57.450
is even the best intention people can say things that are just weird,
00:30:57.450 --> 00:30:59.480
right? Or maybe less empowering to you.
00:30:59.960 --> 00:31:03.600
So I think just being able to have that conversation with them,
00:31:03.920 --> 00:31:08.400
I want to be the person that decides what I'm able to do versus having someone
00:31:08.400 --> 00:31:11.630
else tell me, oh, Dana, I don't think you should do that. I don't know if you're up for it.
00:31:12.120 --> 00:31:15.670
So that's something I always felt like I was challenged with throughout my career.
00:31:16.080 --> 00:31:19.370
So even if they're well-intentioned and think they're helping you by not putting
00:31:19.370 --> 00:31:25.780
you up for that difficult responsibility, challenge them. Say, I want to try to do this.
00:31:26.140 --> 00:31:30.110
So I do think even the best intention people can maybe put some limits on you.
00:31:30.110 --> 00:31:34.790
So be your own advocate, be your own voice, and speak up if you feel you want
00:31:34.790 --> 00:31:36.870
to take on that challenge and want to give it a shot.
00:31:38.080 --> 00:31:41.700
You know, I started our conversation by asking you what went through your mind
00:31:41.700 --> 00:31:43.330
when you were first diagnosed.
00:31:44.010 --> 00:31:48.210
Looking back at your career path to date and your MS journey,
00:31:48.950 --> 00:31:53.640
what would you say is the single most valuable lesson you wish you could share
00:31:53.640 --> 00:31:58.000
with your younger self back on that day you received your MS diagnosis?
00:31:58.770 --> 00:32:00.210
Oh, that's hard. I think.
00:32:01.960 --> 00:32:04.660
Luckily, I've been able to pivot it and think about it along the way,
00:32:04.660 --> 00:32:10.920
right? But when I go back to the day, then it was such an awful situation when
00:32:10.920 --> 00:32:13.000
you realize what you're faced against.
00:32:13.560 --> 00:32:17.020
I think it goes back to that power of positivity, look out the windshield,
00:32:17.020 --> 00:32:18.040
not the rearview mirror.
00:32:18.500 --> 00:32:22.130
And so I think I've been pretty fortunate to handle it okay along the way.
00:32:22.630 --> 00:32:26.260
But I think I just would have tried to empower myself. I think back then I was
00:32:26.990 --> 00:32:29.560
so unempowered and so nervous and so worried.
00:32:29.970 --> 00:32:33.360
I still have a lot of that today. I still don't know what tomorrow brings.
00:32:33.360 --> 00:32:34.520
That's why I live every day.
00:32:34.840 --> 00:32:38.570
Enjoy as much as you can every day and go do that one thing that you're excited
00:32:38.570 --> 00:32:42.870
about doing. Don't put it off like a lot of us tend to do if you have the ability to go do it.
00:32:43.340 --> 00:32:46.480
So I think it'd be something along those lines, Sean, if I would just try to
00:32:47.000 --> 00:32:52.060
make myself know that it's okay and empower myself a little more and not worry
00:32:52.060 --> 00:32:54.270
about the unpredictability and things you can't control.
00:32:54.870 --> 00:32:58.600
Dana Foote, I want to thank you for sharing your story and being an inspiration
00:32:58.600 --> 00:33:01.240
to other professionals who are living with MS.
00:33:01.240 --> 00:33:05.960
But I think so much of what you have shared with us today really extends way
00:33:05.960 --> 00:33:10.470
beyond the workplace into everyone's life. Thanks so much for talking with me.
00:33:11.270 --> 00:33:11.950
Thank you, Jon.
00:33:12.910 --> 00:33:17.460
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:33:17.460 --> 00:33:19.220
by the National MS Society,
00:33:19.610 --> 00:33:23.660
and you can share this episode of the podcast by letting your friends or family
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members know that all they have to do is point their web browser at realtalkms.com slash,
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476.
00:33:32.080 --> 00:33:36.230
You'll find that link in today's show notes, so you can easily copy and paste
00:33:36.230 --> 00:33:38.660
it right into an email or a text.
00:33:39.350 --> 00:33:44.380
I also want to invite you to download the free Real Talk MS app for your iOS
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or Android smartphone or tablet.
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The app will automatically download the latest episode of Real Talk MS.
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You'll be able to download and listen to past episodes. You'll be able to save
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your favorite episodes.
00:33:57.440 --> 00:34:02.000
And what I'm particularly excited about is that I'll be able to share all kinds
00:34:02.000 --> 00:34:07.050
of bonus content with you, and that content will only be available on the app.
00:34:07.600 --> 00:34:11.570
So I hope you'll take a minute to visit the Apple App Store or the Google Play
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Store and download the free Real Talk MS app, and you'll find those links in
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today's show notes or at realtalkms.com.
00:34:21.000 --> 00:34:26.330
Jan Janisch Hanzlik was the first person to have received CAR-T cell therapy
00:34:26.330 --> 00:34:31.760
in a clinical trial measuring the safety and efficacy of this potential treatment for MS.
00:34:32.360 --> 00:34:37.310
Now, in CAR T cell therapy, blood is taken from the patient or a healthy donor,
00:34:37.620 --> 00:34:40.280
much as you would facilitate a blood donation.
00:34:41.170 --> 00:34:45.060
This blood is sent to a lab where the white blood cells, or T cells,
00:34:45.290 --> 00:34:51.900
are separated out and reprogrammed to carry a receptor designed to fight a particular condition.
00:34:52.490 --> 00:34:57.180
Now, this receptor is known as a chimeric antigen receptor, or CAR.
00:34:57.970 --> 00:35:02.920
Over the course of several weeks in the lab, these fortified T-cells multiply
00:35:02.920 --> 00:35:07.430
until there are millions of them, and then they're reintroduced to the patient
00:35:07.430 --> 00:35:09.210
through an intravenous infusion.
00:35:10.150 --> 00:35:16.620
We met Jan last year in episode 424 of Real Talk MS when she gave us a first-hand
00:35:16.620 --> 00:35:19.620
report on how she was responding to this new treatment.
00:35:20.460 --> 00:35:25.000
During that conversation, Jan promised to come back and share an update on how
00:35:25.000 --> 00:35:28.820
she was responding to CAR-T cell therapy one year later.
00:35:29.550 --> 00:35:33.190
Now, some of you may also recall that just a couple of months ago,
00:35:33.760 --> 00:35:39.720
two major clinical trials for CAR T-cell therapy in MS were paused after three
00:35:39.720 --> 00:35:41.720
trial participants died.
00:35:42.600 --> 00:35:45.700
Jan has some thoughts about those developments as well.
00:35:46.380 --> 00:35:50.140
I hope you're planning to join me next week when Jan Janisch Hanzlik returns
00:35:50.140 --> 00:35:53.780
to the podcast for a conversation you won't want to miss.
00:35:54.840 --> 00:36:01.740
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.
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