National MS Society

Ryan Gorman hosts an iHeartRadio nationwide special featuring Robin Nunley, spokesperson for the National MS Society. Robin Nunley joins the show for MS Awareness Week to discuss multiple sclerosis, resources available for those diagnosed with the disease, research underway to find a cure, and their annual Walk MS event.

Episode Transcript

(00:00):
Welcome to iHeartRadio Communities, a publicaffairs special focusing on the biggest issues impacting
you this week. Here's Ryan Gorman. Thanks so much for joining us here
on I Hear Radio Communities. I'mRyan Gorman, and we have a very
important conversation lined up for you forMS Awareness Week. We're joined by the
National Multiple Sclerosis Society, which youcan learn more about at Nationalmssociety dot organ

(00:25):
joining me for insight into the diseaseand the work this organization does. I
have Robin Nunnley, a spokesperson forthe National MS Society. Robin, thank
you so much for coming on theshow, and let's start with the backstory
of how this organization came about.Yeah, thank you for having us,
Ryan, I really appreciate it.So the National mess Society was founded in
nineteen forty six by a woman namedSylvia Lowry. And you know, her

(00:50):
brother had just been diagnosed with MS, and there was very little information available
about the disease at that time,and so she took an ad in the
New York Times and asked for anybodywho had survived the disease to reach out
to her. And she got fiftyresponses and so she knew that there was
a lot of interest and inquiry aboutmultiple sclerosis and there needed to be an

(01:15):
organized movement around that, and soshe founded the National MS Society in nineteen
forty six, and then twenty fiveyears later founded the International Federation of MS
Societies throughout the world, and thenin nineteen seventeen, in nineteen excuse me,
two thousand and seven, the NationalMS Society founded the International Progressive MS

(01:38):
Alliance, which is a worldwide allianceof sixteen countries doing research around progressive MS
specifically. So in that time thatthe MS Society was founded, a lot
of advancements have been made. SylviaLowry put together twenty of the world's best
researchers and funded their research. Andit's due in large part that early work

(02:00):
that we have many of the treatmentsthat we have today. It really is
incredible. You can read about herstory at Nationalmssociety dot org. And her
framed quote that hung in her officereally I think exemplifies the mission that she
was on never give up right,and I mean I think that is attributed

(02:23):
to some of the success that theMS Society has had today. Several years
ago we changed our mission Statement toactually include the word cure. I think
we were apprehensive to talk about acure and it seems so far away.
And now with so many advancements,we've had more advancements in MS research in

(02:44):
the last five years than we've hadin the previous seventy wow, And so
that research is really escalating and it'svery hopeful for people that we now are
we have the cure in our sites, so you know, people do talk
about that that there will be acure in our lifetime. And since the

(03:04):
founding of the National MS Society,the amount of money that's been raised going
towards research over a billion dollars.And to give everyone a sense as to
how many people have worked with theNational MS Society in various ways to make
a difference, more than five hundredthousand volunteers. I mean, just really

(03:28):
an incredible run for this organization.And like you said, now with a
focus on a cure, it's almostlike you're just getting started here. Yeah.
You know, we really didn't havea lot of quantifiable data about how
many people lived within s and intwenty nineteen, the MS Society released their

(03:50):
Prevalence Study on Multiple sclerosis and weuncovered that there are nearly a million people
in the United States who live withinS two point four nation or worldwide.
So it really is a disease thatimpacts a lot of people. And then
of course when you when you alsocount in the people who support and love

(04:14):
people who live with MS, it'sit's a very impactful group. I'm Ryan
Gorman and for MS Awareness Week,we're joined by Robin Nunley, spokesperson for
the National MS Society. You canlearn more at National MS Society dot org.
So let's talk about what exactly MSis. Yeah. So, so
MS is an unpredictable and often disablingdisease of the central nervous system and it

(04:40):
disrupts the flow of information to thebrain. There is no cure, but
again due to the research funded bythe MS Society, there's now more than
twenty disease modifying therapies that people haveoptions to take. It's a it's a
disease that's diagnosed by a neurologist.It's ultimately and autoimmune disease. But because

(05:01):
it impacts the central nervous system,it does have neurological impacts. So so
the symptoms can vary from you know, cognitive issues, walking issues. It
just it depends on where those lesionsare within your spinal cord and and how
that impacts the system, the symptomsand in terms of its diagnosis, what

(05:25):
is the process like there. Yeah, typically I think people would probably have
an MRI I and those those lesionswould show up on an MRI. So
some of the research that the MSSociety has funded is MRI I technology because
the finer the resolution, the soonerthat we can develop get people started on

(05:47):
a disease modifying therapy. So so, an MRI is typically how how people
are diagnosed. Sometimes people will havea spinal tap that can be another another
way of diagnosed, but I wouldsay the typical most often is an MRI
of the spine, the neck andeven the brain. And you obviously know

(06:12):
people who are dealing with MS.Can you give us a sense as to
what their life is like so wecan kind of better understand how this disease
impacts how one's able to operate ona day to day basis. Yeah,
you know, I think that peoplewho have been diagnosed more recently and are

(06:34):
on a disease modifying therapy, theirdisease course is much different. Than people
who were diagnosed many years ago beforethere were options for disease modifying therapies.
And so I think people who arediagnosed today live relatively successfully and are thriving.

(06:56):
You know, they certainly do havegood days, and bad days can
be marked by pain, you know. They they have what they call the
MS hog, some numbness and tinglingand their fingers and feet, heat sensitivity.
Those are some of the symptoms thatI hear people talk about. So
it really just depends on maybe wherethose lesions are where you are in your

(07:21):
disease course. But but most peoplewho are diagnosed with MS have what we
call relapse remitting MS, and sothat is a diagnosis that is marked by
by periods of relapse. So theymay go into remission for you know,

(07:44):
most what you would consider remission forthe most part, and they may not
have a relapse for for many years, and then they'll have more symptoms and
and they'll reach a new plateau andnew benchmark with their disease. But but
it is aggressive disease. So thedisease modifying therapies helped to reduce the lesions

(08:07):
on the brain and manage those relapsesso that people have less and less of
those as they take their modifying therapies. I'm Ryan Gorman and for MS Awareness
Week, we're joined by Robin Nunley, a spokesperson for the National MS Society.
You can learn more at Nationalmssociety dotorg. And think, for a
lot of us, we hear MSand we think of it as this really

(08:31):
debilitating disease. But it sounds likewith some of the treatment options that you
have mentioned, great strides have beenmade in order to make dealing with this
disease as manageable, I guess aspossible. Yeah, I think that's true,
And unfortunately that's not true for everyonebecause there are other forms of MS.

(08:54):
There's a progressive MS that I mentionedearlier, and you know, those
symptoms can be much more dehabilitating.And even people who have relapse remitting in
a mess certainly do have periods ofrelapse and moments of difficulty. And so
we often say you probably know someonewho lives within S. You just don't

(09:16):
realize it because the symptoms are somewhatinvisible. You don't necessarily know when someone's
in pain. You can't necessarily seethat they're having brain fog or obviously some
people who have trouble walking, youmight notice that, but for the most
part, the symptoms can be invisible. And we call it the snowflake disease
because symptoms are different for everyone,which is why it makes diagnosis a little

(09:39):
difficult too. I know there havebeen a number of celebrities who have been
diagnosed with MS, Montel Williams perhapsthe most famous, also Christina Applegate more
recently. How much has that helpedraise awareness about MS and how much have
you seen in terms of the interestin this disease and the support for fighting

(10:01):
against it in recent years. Yeah, I think, you know, anytime
a celebrity or someone who's well knowngoes public with their diagnosis, that definitely
drives interest and awareness to our ourour social media channels and our website,

(10:22):
and so you know, Solma Blairis a is another person who's been diagnosed
recently and a lot of people havefollowed her journey with the disease, and
so, I you know, Ithink that all of that helps to drive
awareness and people with who live withinus do appreciate that. They appreciate the
light that we shine on the onthe disease that they have and the challenges

(10:45):
that they have living with it.And I've actually seen Jamie Lynn Siegler,
she played Meadow soprano on The Sopranos. She's been doing commercials for one of
the treatments that that you alluded toearlier. So that's right, Yeah,
definitely that the other day too.Yeah, helps raise awareness in terms of
the work your organization does. Canyou talk a little bit more broadly speaking

(11:11):
about the different things that you're involvedin. Yeah, So yeah, that's
a good a good thing. Thankyou very much for mentioning that. So,
the National Meth Society helps people withMS live their best lives while we
search for a cure. And sothe ways that we do that is we
participate in advocacy, We advocate forgood health policy and funding for MS research

(11:37):
through the National Institutes of Help andthe Consumer Directed Research Program, which is
funded through the Department of Defense.Because there are a number of veterans who
live within S, it's a higherpercentage of veterans who live within this than
the regular population. About seventy thousandveterans in the United States live within S.
And then other things are services likesupport groups, many of our educational

(12:01):
programs. Of course, our websiteis really sort of a go to place
for evidence based information around multiple servicesand treatments and therapies that people can rely
on that have been vetted and researched. And then our MS Navigator program is
another great service that we offer.It is basically a hotline that people can

(12:26):
call in and get information and referralto services and support. So whether or
not it's learning about what insurance coverageyou might have for particular therapy or how
you might get pre authorization or qualifyfor benefits, those MS navigators can be
very very helpful for helping someone withMS and their family members navigate the challenges

(12:50):
of the disease. And then ofcourse the research that we fund. We
are the world's largest funder of MSresearch and so our research, our funded
research has contributed to all of thedisease modifying therapies that are on the market
today. So very proud of thework that we have done and that we

(13:11):
continue to do. As I said, to look for a cure for MS
while still providing services for people wholive with MS. Another thing that we
do is we work with many ofthe neurologists. We have an MS A
partner in MS care program through theNATIONALS Society. That's sort of a good
house keeping seal of approval for neurologistswho have a basis of information around the

(13:33):
disease and do continuing education and workwith the pharma companies to understand the therapies
and how those work. And sowe provide fellowships for neurologists and clinical opportunities
for people to incentivize them to gointo the study of multiple sclerosis. So

(13:54):
everything that drives information and re searchtowards program services, advocacy and the research
for a cure is the work ofthe National and S Society. On a
day to day basis, there reallyare a wealth of resources at Nationalmssociety dot

(14:15):
org. Gom Ryan Gorman for MSAwareness Week, I'm joined now by Robin
Nunley, spokesperson for the National MSSociety. I want to go to one
thing you highlighted which everyone can findon the website as well, support for
those dealing with MS, because thisis one of those diseases where I'm sure
if you are dealing with it,it can perhaps be difficult to describe to

(14:41):
other people, even if you havea really good support system friends and family,
and perhaps having communication with somebody elsewho's going through something similar that probably
is very valuable, right Yeah,and you know, so you know,
it can be very isolating, andso we do provide support groups throughout the

(15:01):
country. One of the things thatthe pandemic did was encourage us to create
some virtual support groups, so there'sopportunities for people to participate not only in
person, but also virtually. Oneof the programs that we created during the
pandemic was Ask the MS Expert,and so that is a virtual program that

(15:22):
people can participate in and learn moreabout any number of issues and challenges that
they're faced with living with MS.And so those are all some of the
resources that people can avail themselves ofand find that support and connection to people
living with MS that may have hadsome experience that they would find relevant.

(15:43):
And then let's get to some ofthe events that you have as part of
the work you do at the NationalMS Society, and we'll start with walk
MS. How did this massive eventcome about? Yeah, so I'm smiling
because this is an exciting time ofyear for the National Meths Society moving into

(16:04):
our event season, and of coursewalk MS is one of our signature events.
It is the largest gathering of peoplewith MS and it launched in nineteen
eighty eight. Our first walk wasin Minnesota. I had about twenty five
hundred people participating and they walked fifteenmiles, raising two hundred and fifty thousand

(16:27):
dollars. And it expanded to fortytwo sites across the United States and then
raised four million. And today theevent has grown to more than two hundred
and eighteen in person locations, plusa walk MS Your Way, which is
a virtual option that we developed duringthe pandemic, and walk MS fundraising,

(16:48):
as you mentioned earlier, reached acumulative total of a billion dollars in twenty
seventeen. It's amazing and looking atsome of the top teams, I mean,
you have regular people all across USas country raising incredible amounts of money
to help fund the work you doand to find a cure. One team
raising almost one hundred and fifty thousanddollars. I mean, just really tremendous

(17:11):
work. And how can people participate? I mean these events are happening in
different parts of the country all thetime. Right now, as these walks
have begun for twenty twenty four,how would you suggest people go about being
part of them, either by walkingin an MS walk or by doing it

(17:34):
virtually. Yeah, so you know, when it started three decades ago,
it was supposed to happen on thesame day in April across the country,
and that has since morphed into ourfirst walk being launched just a couple of
weeks ago in West Palm Beach,Florida through the month of June, and

(17:56):
so so we have our walk seasonnow. Of those two hundred and eighteen
walks, there's a walk in everystate and people can go to walkims dot
org or the website that you mentionedearlier as well and find their local walk,
and we would encourage you to registerfor walking us, build a team,
bring your friends, your family.You'll find it as a very supportive

(18:18):
and engaging opportunity to meet with peoplewho live with MS and it's a very
supportive environment. And if you're ifyou aren't a walker and you're you're not
interested in participating that way and helpingraise money, we always need volunteers.
You mentioned earlier, the cadre ofvolunteers that we have throughout the country to
pull off these events. We absolutelycould not do that work without our volunteer

(18:41):
force, and so we welcome volunteersto help. You know, if you've
got a high school kid who needssome service hours or a group that's looking
to get involved, those are greatresources for us. And we'd love to
see you at a walk in thisevent throughout the country. And of course
these walking events, they're just tremendousevents with great people. But you also

(19:03):
have prizes and challenges and things likethat as well. So this is really
again morphed into quite the event.And I'm assuming here in twenty twenty four,
you're expecting big participation in these walks. Yeah, you know, of
course, we took a pause fora couple of years, and then even

(19:23):
when we did come back to ourin person events, I think people were
still maybe a little reluctant to volunteeror to walk and be in crowds.
And so at our West Palm BeachWalk just a couple of weeks ago,
we had record numbers both in fundraisingand participation. I think it's safe to
say we're back to our pre pandemicnumbers and we're looking forward to a great

(19:48):
opportunity for everyone to get together thisyear. And as you mentioned, we're
coming come on in this awareness week, and so many of the walks are
taking place in the next couple ofweeks and throughout the next of months,
so lots of opportunities to engage andbe involved. I'm Ryan Gorman and for
MS Awareness Week, we're joined byRobin Nunley, spokesperson for the National MS

(20:08):
Society. You can learn more aboutthe work they do, support that work
and find out more about walk MSat Nationalmssociety dot org. And you mentioned
this a moment ago, but Iwanted to highlight it again because you talked
about how these walks they create acommunity and that supports that we mentioned that's

(20:30):
so important for those who are dealingwith this disease and those who are supporting
them, because you know, thisis not something that just impacts the person
who's been diagnosed with MS. Yeah, that's that's a really good point.
It's a great segue into the launchof our new walk experience. So we

(20:52):
spent the last couple of years developinga new experience for walk MS. So
if you've been to a walk MSpreviously and you go to one now,
you'll see some enhancements and changes,and we really do emphasize that people with
MS are at the center of everythingthat we do, and we proudly comp

(21:15):
proclaim that each person diagnosed with MShas a circle of support surrounding them,
and that's a very prominent part ofthe presentation that we give people with MS.
We tell their story and we talkabout the people who support them in
their journey of MS, and Ithink most people would say that, you

(21:36):
know, they feel very supported bythe people who are around them. We
have a center within the walk experience, and that's where you can find information
on multiple sclerosis, some of theevents and the things that we do,
the resources and programs that the MSSociety offers, and then we also have
a circle of support where you canride on a sticker the people you love

(22:00):
with MS and add that to ourlarger circle of people. We're all walking
for to help make a difference andfind a cure for multiple sclerosses. I
also want to talk about another eventthat you hold annually, Bike MS,
because I know someone who has beendiagnosed with MS. He's been living with
it for quite some time and he'stold me about some of the difficult days,

(22:25):
difficult moments, but I also knowthat he participates in this event every
year and rides miles miles and italways it always amazes me because I mean
I couldn't do a quarter of whathe's able to do with his bike MS
ride. It's just it's inspiring tosee. Yeah, bike MS is the

(22:51):
largest fundraising cycling series in the world, so it is a great opportunity for
people who like to cycle to comeout. We do have a ride with
MS program, so that encourages peoplewho live with n s to cycle.
Many of our rides have routes ofsay twenty five to fifty to seventy five

(23:12):
up to one hundred miles day oneand then and them'll stay over and do
ride the second day as many asmaybe fifty or seventy five miles, so
it is a log mile. Theyare fully supported rides, so we have
support in gear vehicles that follow cyclistsand help them get to the next rest

(23:32):
stop, which we have rest stopsabout every ten miles a fun finish line.
So BIKMS is another opportunity for peopleto get involved and engaged, and
of course we welcome cyclists to comejoin us in any of our BIKMS events
throughout the country. I believe there'sthirty nine now and engaging seventy thousand cyclists,

(23:52):
So we would invite people to comeand join us there. And again
if you're not a cyclist, andyou know, that is an event that
requires a tremendous supert of volunteers,so we would welcome anyone to volunteer as
by kims. Are there any otherprograms or events, even if they're further
on down the line that you wantto mention here? Yeah, I think

(24:15):
nationally by k ms and walk insare probably our two signature fundraising events,
but every community has other events.So whether it's a gala or a dinner
or you know whatever, whatever thoseevents are in your community. You know,
I would just encourage you to engageand involve with your local chapter because

(24:37):
there will be other events that arelocal to your area and your community that
you would you would want to bea part of. Another thing that we
have. Each one of our chaptersdoes have a board of directors and we're
always looking for leadership volunteers who bringa skill set that complements some of the
other folks that we work with onour boards. And then we also have

(24:59):
community counsel in each chapter that arespecific geographic areas where people within their own
communities put a lot of emphasis onawareness and building connections in their community.
So there's lots of opportunities to engageand involve in different events and functions.
It just depends on where you arein the country and what you like to

(25:21):
do. I'm Ryan Gorman for MSAwareness Week. I'm joined now by Robin
Nunley, spokesperson for the National MSSociety. You can learn more about all
the work they do and more aboutthese events we've been talking about at Nationalmssociety
dot org. So how can peoplelistening support the work the National MS Society

(25:41):
is doing outside of participating in saywalk MS or bike MS or another local
event that they have going on intheir community. What are the other ways
that they can get involved? Yeah, so obviously you can go to our
website and make a donation. Oftenpeople will make and memory or in honor
of someone. Many people who participateand walk and bike make donations to their

(26:07):
participants walk or a bike team.And of course lots of opportunities on the
website for education, engagement, learningabout MS, finding physicians and resources,
finding a support group. I wouldsay that our website really is sort of
a first stop for finding resources andopportunities to involve. And you also have

(26:33):
opportunities available to become an MS activist. For example, there could be someone
listening right now they have tremendous skillson social media or something like that,
and just getting the word out awarenessand information about MS, like we were
talking about earlier. When there's acelebrity diagnosis or something like that, it
really helps the rest of us understandthis disease. Yeah, I'm glad you

(26:59):
brought that up, because I didtalk about advocacy earlier, but I didn't
really go into a lot of detailabout our MS activists. But you can
sign out to be an MS activiston our website and that will put you
in touch with legislation in your area, and we'll send you emails when we
need you to reach out to maybeone of your either local elected officials or

(27:22):
maybe your your congressman or senator andask for their help in supporting specific legislation,
whether it be funding for some MSresearch or a particular bill that provides
access to medication and insurance and resourcesfor people who live with MS and and
other diseases as well. Those piecesof legislation are typically supported by other groups

(27:48):
as well. But that's a greatthing to do. It's something that you
can do from your home. It'san easy way to lend your voice to
two hours and and you never haveto leave your house. So that's a
wonderful opportunity for people to engage.So you can find information on being an
MS activist on our website and thatspecifically will engage you in the advocacy work

(28:11):
that we do. And finally,real quick for those who might be listening
who are dealing with MS, thewebsite is such a valuable resource to find
programs services, also to ask anMS expert if you have questions. So
it seems like really helpful material online. Yeah, and when you go to

(28:33):
our website, you can find informationabout our MS navigator program. And so
I would just tell people maybe startby calling an MS navigator, you know,
and you can also on our websitethere's a chat that you can chat
with an MS navigator as well.But that's probably a good first line of

(28:56):
defense because these are trained individuals.Most of them have a background in social
work, so they listen and theylisten for ways that they can help connect
you to resources that will help youget information that you need. So I'll
just mention that number. It's oneeight hundred three four four four eight sixty

(29:18):
seven. But you can find anMS navigator on our website for MS Awareness
Week. Robin Nunley, spokesperson forthe National MS Society. Again, you
can learn more at Nationalmssociety dot org. Robin, thank you so much for
the work you're doing with the NationalMS Society and for coming on the show.
We appreciate it. Thank you verymuch. Ryan, I appreciate it.
All right. That's going to doit for this edition of iHeartRadio Communities.

(29:40):
I'm your host, Ryan Gorman.We'll talk to you again real soon.