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      <h2>How long is the usual interval between symptom onset and a diagnosis of ALS:</h2>
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ALS PATIENT VIDEOS

FINDING STRENGTH IN ALS: ANDREA PEET

 * With Dr. Richard Bedlack

FINDING STRENGTH IN ALS: DAVID LLOYD, JR.

 * With Dr. Richard Bedlack

BREAKINGMED COVERAGE OF THE 2022 ANNUAL NEALS MEETING

NEALS: REDUCTION IN NFL WITH TOFERSEN MAY BE TIED TO LESS DECLINE IN CLINICAL
FUNCTION IN SOD1 ALS

 * Statistical model uses plasma NfL to predict clinical outcomes

NEALS: CURCUMIN SAFE IN ALS, BUT SHOWS NO EFFECT ON DISEASE PROGRESSION

 * Trial featured virtual data collection

NEALS: UPDATE ON NEWLY APPROVED PB/TURSO TREATMENT FOR ALS

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CLINICAL CONVERSATIONS: CHALLENGES AND OPPORTUNITIES IN ALS — CAN WE MODIFY THE
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RECOGNIZING ALS IN THE CLINIC AND ESTABLISHING A DIAGNOSIS: PRACTICAL APPROACHES

 * Video Presentation with Dr. Richard A Bedlack Jr, and Jinsy A. Andrews

THERAPIES FOR ALS: OPTIMIZING THEIR USE

 * Video Presentation with Dr. Richard A Bedlack Jr, and Jinsy A. Andrews

NOVEL THERAPEUTIC STRATEGIES FOR PATIENTS WITH ALS: LOOKING AHEAD

 * Video Presentation with Dr. Richard A Bedlack Jr, and Jinsy A. Andrews

EXPERT ANALYSIS

INVESTIGATIONAL ORPHAN DRUG REDUCES NEED FOR DURABLE MEDICAL EQUIPMENT IN ALS
PATIENTS

 * Reldesemtiv significantly lowered risk of being prescribed, needing DME

EDARAVONE MAY BENEFIT ALS PATIENTS WITH REDUCED FORCED VITAL CAPACITY

 * Post-hoc analysis finds positive results among subgroups

SURVIVAL ANALYSIS REVEALS BENEFIT FOR INVESTIGATIONAL ALS DRUG

 * Sodium phenylbutyrate-taurursodiol demonstrates longer median survival
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BREAKINGMED COVERAGE OF 2022 ANNUAL NEUROLOGY MEETING

NOVEL ORAL ALS AGENT PROMISING, BUT NOT YET A GAME CHANGER

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CAN A GOLD-BASED AGENT REDUCE MORTALITY IN ALS?

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CASE STUDY: USING THE GOLD COAST CRITERIA TO MAKE A CONFIDENT DIAGNOSIS OF ALS
IN A PERSON WHO PRESENTS WITH LEFT LEG WEAKNESS

 * Introduction
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CASE STUDY: DEVELOPING A MANAGEMENT PLAN USING FDA-APPROVED THERAPIES FOR A
PATIENT WITH BULBAR-ONSET ALS

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FINDING STRENGTH IN ALS: ANDREA PEET


WITH DR. RICHARD BEDLACK

This activity is supported by educational grants from Amylyx Pharmaceuticals,
Inc., Cytokinetics, Inc., and Mitsubishi Tanabe Pharma America, Inc.


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Program Contents

 * Finding Strength in ALS: Andrea Peet With Dr. Richard Bedlack (17:32)
   
   Dr. Bedlack: Hello everyone. I'm Dr. Rick Bedlack, professor of neurology and
   director of the ALS program at Duke University in Durham, North Carolina. And
   I'm here today to highlight some of the most important lessons that I've
   learned in my career.
   
   When I first encountered ALS back in the late nineties, I remember watching
   my attending say to the patient, "We don't know why this happens, and there's
   really nothing we can do about it. You're going to become progressively
   weaker, eventually totally disabled, and your life's gonna be shortened to
   two to three years. You just have to go home and get your affairs in order."
   And since then, I've learned that there can be a lot of variability in this
   disease, and there's many treatments that we can offer. But perhaps most
   importantly, I've learned that people with ALS can live amazing lives with
   this disease. And I'm joined today by a person who's doing just that. Mrs.
   Andrea Peet.
   
   So thanks for joining us today, Andrea.
   
   Andrea: Thank you for having me.
   
   Dr. Bedlack: Let's go back and let's start with what your life was like right
   before your first symptoms of ALS, and then take us through how you
   recognized that something was wrong, and how you eventually got to an ALS
   diagnosis.
   
   Andrea: So I was a city planner living in Washington DC with my husband. I
   was training for a half Ironman triathlon, and then I noticed that my times
   were slowing down. I was noticing that my foot would shake on the bike. I
   thought that I had overtrained. When I did the race, I was tripping over my
   toes on the run.
   
   So I thought I had a race injury. So I went to a physical therapist and she
   said, no, your muscles just don't seem strong enough for someone who did that
   long of a race. So she said, I want to be careful and send you to a
   neurologist.
   
   Dr. Bedlack: So you were much younger than most people who have their first
   symptoms of ALS. How old were you when this all started?
   
   Andrea: I was 33 when I was diagnosed.
   
   Dr. Bedlack: And then your journey is not that unusual in the fact that it
   took a long time for people to finally put a name on what was wrong. How long
   was it from symptom onset until the day that somebody told you they thought
   that you had ALS?
   
   Andrea: Eight months. When I heard probable ALS, I thought it was a chance it
   was something else. That took 11 months until I understood that diagnosis.
   
   And in that time we bought a house, we had been planning to start a family.
   And then the neurologist was like, you know, you could be paralyzed by the
   time the baby comes. And so that was when I really, it hit me.
   
   Dr. Bedlack: So take us back to that day when the first neurologist told you
   this is what they thought you had. Was your experience as bad as mine was? Do
   you remember the words that were said and how you felt when you were coming
   home from the hospital?
   
   Andrea: I think it worked out. I was like, ready. I remember walking out of
   the hospital and talking and we went to dinner. So I was eating, and I
   thought, who knew how much longer I would have to do that? And so I really
   was resolved that I would live my best life for the time that I could.
   
   Dr. Bedlack: So between that day when you decided to live your best life
   possible, and the day that you told us all that you were going to accomplish
   this seemingly impossible goal of a marathon in all 50 states, tell us how
   all that evolved for you.
   
   Andrea: It was August of 2014 so the ice bucket challenge was going on. And
   so, all of a sudden everyone was talking about ALS and raising money for our
   research and that brought me hope when I needed it. I thought that I would be
   a fast a progressor because I lost my speaking normal, my speech, and I was
   using a cane and then a walker.
   
   So I bought a recumbent trike in order to do one last triathlon, before my
   body failed me. And I came in last with my best friend by like an hour. And
   people stayed and cheered me in, I realized in that moment that I can inspire
   people and I could use my training to not just raise money for research, but
   to help people appreciate what their bodies could do.
   
   So I kept on riding my trike, doing races, waiting for ALS to take over. I
   started swimming more, doing pilates. And then I realized that my body was
   responding well to the exercise.
   
   So we moved down to North Carolina, I met you. Then, you know, I raced five
   years living with ALS, and I said, there is a difference between not dying
   and actually living. And so I said I am not going to wait around for ALS to
   catch up anymore. I am going to take on the craziest goal I can think of
   which was a marathon in every state.
   
   Dr. Bedlack: I remember when you told me about this and I realized it
   probably was going to happen because when you first told me, I mean, of
   course I was rooting for you, but in the back of my mind thought this was
   impossible for anyone. But, I remember when it looked like it was gonna
   happen, I was thinking, okay, well I definitely wanna be there at number 50,
   and probably going to be North Carolina, South Carolina, Tennessee, Virginia,
   someplace that I could drive to.
   
   And what did you decide to do for your last one?
   
   Andrea: Alaska .
   
   Dr. Bedlack: Not just Alaska, perhaps the most remote part of the United
   States that I've ever been to. But you had a massive following. Was it 50, 60
   people that all came out to this island to watch you do this? That was really
   cool. I mean, I have to say,
   
   I don't think I've ever met anyone who's doing a better job of making noise,
   of raising awareness. I mean, I've seen you do it on so many levels, whether
   it's in a elementary school, teaching little kids about this disease and what
   can be done about it or you've got a foundation, you're making a movie that
   we're hoping is gonna be at some big film festivals.
   
   Tell us about your foundation and your movie.
   
   Andrea: So the Team Drea Foundation we started it in 2016. We have now raised
   a million dollars for ALS research. We have all volunteers. I run the day to
   day stuff.
   
   Everything that we do is so that people appreciate what their bodies can do
   and to our realize that ALS can affect anyone at any time.
   
   So the film is an extension of that.
   
   Dr. Bedlack: You said something interesting to me. One of the people that
   watched it, you mentioned it's the first movie that actually told her story
   of ALS. So tell us a little bit more about that. I mean, that's an angle that
   I didn't really understand this business of the disease maybe being very
   different from the experience of a young female compared to an old man like
   myself. So tell us a little bit more about that.
   
   Andrea; So there has been a group of for telling her ALS story. And it is a
   group of over forty women who were diagnosed before the age of 35. There are
   lots of documentaries about ALS out there, and I wanted to make a piece about
   hope. To give people hope when there are diagnosed.
   
   Now there are more treatments then when you started, but I think what people
   hear when they're diagnosed is still that there's nothing that you can do. I
   just heard it over and over from my friends.
   
   So I wanted to have a piece out there showing that you can live an amazing
   life. And even if it is not eight years and 50 marathons, you have time.
   
   ALS is still, right now a fatal disease, but it includes a stay of execution
   and we have to do the best we can with the time that we have regardless.
   
   Dr. Bedlack: So, as I watched that rough cut of your movie, I was so
   impressed by some of the people that you highlighted that inspire you. Can
   you tell us about some of the people that inspire you and why?
   
   Andrea: So my friend Mayuri was diagnosed in late twenties or early thirties.
   She is fully paralyzed. She has the trach. She needs around the clock care.
   
   But she has written a book with her eyes, and she is going back to school to
   get a Bachelors in Physics. She already has a Master's in International
   Relations and she is like totally acting able.
   
   But she is so inspiring to me that you can live a meaningful life.
   
   Dr. Bedlack: I thought that was really, really amazing. And such a great
   sense of humor too.
   
   Andrea: Totally, yes.
   
   Dr. Bedlack: So what message Andrea, would you have for newly diagnosed
   patients? Because a lot of times I know people leave even our clinic and
   they're pretty down, they're pretty sad.
   
   How do they find their way out of that and realize what you've realized that
   you gotta make the best life you can no matter what you have?
   
   Andrea: What I finally realized is that when you can be depressed or you can
   live your life.
   
   Time is going to pass either way. So you might as well help yourself and your
   family and just go on and do whatever it is you have always wanted to do and
   who knows what will happen.
   
   Your story is not yet written. Only you can do that.
   
   Dr. Bedlack: Well, I've so enjoyed talking with you as I always do, and I
   hope our viewers are going to be inspired by you as I have been over the past
   six years.
   
   I certainly hope doctors who watch this will change the way they talk to
   their patients and stop putting expiration dates and limitations on their
   lives.
   
   You've shown us clearly that even though ALS could weaken a person on the
   outside, it doesn't have to affect the best parts of them.
   
   And I know I've told you this before, but I'll say it again. You are just
   quite simply the strongest person that I've ever met.
   
   So thanks for being you.
   
   Andrea: Thank you for all that you all do for our community. You inspire hope
   every day, and we all need that.


PRETEST (1 OF 3)


HOW LONG IS THE USUAL INTERVAL BETWEEN SYMPTOM ONSET AND A DIAGNOSIS OF ALS:

 * 1 day
 * 1 week
 * 1 month
 * 1 year

0%
Continue

The gravity of an ALS diagnosis cannot be underestimated, but as ALS patient
Andrea Peet says, while the disease is fatal, a patient may experience a stay of
execution a time to live one's "best life." That is what she has done for the
past 8 years and in this exclusive video her doctor, Richard Bedlack, MD, and
Andrea take us through her amazing adventure, her "best life."


FACULTY

Richard Bedlack, MD, PhD
Professor
Department of Neurology
Duke University
Durham, North Carolina
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CME/CE INFO

This activity is supported by educational grants from Amylyx Pharmaceuticals,
Inc., Cytokinetics, Inc., and Mitsubishi Tanabe Pharma America, Inc.

--------------------------------------------------------------------------------


FACULTY

Richard Bedlack, MD, PhD,
Professor
Department of Neurology
Duke University
Durham, North Carolina

--------------------------------------------------------------------------------

Release Date: Oct 31, 2022
Termination Date: Oct 30, 2023


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CREDIT AVAILABLE

Physicians: 0.00
Nurses: 0.00
Pharmacists: 0.00


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ESTIMATED TIME FOR COMPLETION OF THIS ACTIVITY:

CME for Physicians: 0 minutes
NCPD for Nurses: 0 minutes
CPE for Pharmacists: 0 minutes


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INTERPROFESSIONAL EDUCATION COMMITTEE

Interprofessional Education (IPE) requires collaboration among and between
professions in order to enhance skills and strategies for effective healthcare
team practices including communication and coordination of care. In guiding the
overall CE Program, the role of the IPE Committee is to improve
interprofessional collaborative practice by helping to recognize the different
roles, responsibilities, and expertise of other healthcare professionals to
develop team strategies that improve outcomes.

The IPE Committee members include:

Vandana G. Abramson, MD
Associate Professor of Medicine
Vanderbilt University Medical Center
Nashville, Tennessee

James D. Bowen, MD
Medical Director, Multiple Sclerosis Center
Swedish Neuroscience Institute
Seattle, Washington

Anita Roy Desai MD, FAAP
Executive Director of Patient Simulation
i-Human Patients by Kaplan
Kaplan North America
Fort Lauderdale, Florida

Veronica Esquible, PharmD
Clinical Lead Pharmacist
Department of Pharmacotherapy
Swedish Medical Center
Seattle, Washington

Bradley J. Monk, MD, FACS, FACOG
Arizona Oncology (US Oncology Network)
Professor, Gynecologic Oncology
University of Arizona and Creighton University
Medical Director of US Oncology Research Gynecology Program
Phoenix, Arizona

Brant Oliver, PhD, MS, MPH, APRN-BC
Healthcare Improvement Scientist
Associate Professor
The Dartmouth Institute & Geisel School of Medicine at Dartmouth
Hanover, New Hampshire

Ilon S. Rincon Portas, MD
Executive Director
Kaplan Medical Prep
Kaplan North America
Fort Lauderdale, Florida

Kendall Shultes, PharmD, BCOP
Clinical Pharmacy Specialist
Stem Cell Transplant & Cellular Therapies
VA Tennessee Valley Healthcare System
Nashville, Tennessee

Katherine Sibler, MSN, WHNP-BC
Nurse Practitioner
Vanderbilt Breast Center
Nashville, Tennessee


CME/CE INSTRUCTIONS


To obtain CME/CE credit:

 1. Read or listen to each activity carefully.
 2. Complete/submit each posttest and evaluation.
 3. A record of your participation will be available in the CME Tracker area of
    this application and the certificate will be available on our website.

There is no fee for this activity.

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CONTACT INFORMATION

For questions about content or obtaining CME credit, please contact us.

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TARGET AUDIENCE

This activity was developed for neurologists, nurse practitioners, physician
assistants, nurses, pharmacists, and other relevant healthcare professionals
that treat ALS.

--------------------------------------------------------------------------------

ACTIVITY GOAL

The goal of this program is to highlight stories of people in the ALS community
who are thriving by tapping into other sources of strength such as resilience,
humor, advocacy, and creativity. By highlighting these stories, we hope to
inspire strength in others.

--------------------------------------------------------------------------------

LEARNING OBJECTIVE(S)

 * Assess implications of this MEDBrief<sup>&reg;</sup> news report for the
   practice setting.

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