More Than a Ride: Cyclists Get in Gear to Help fight Multiple Sclerosis

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These days, wordplay between "fun" and "fundraiser" is ubiquitous (almost as much as "friend" and "friend-raiser). However, when a "fun" claim is backed up with a pleasurable activity like biking to …

These days, wordplay between "fun" and "fundraiser" is ubiquitous (almost as much as "friend" and "friend-raiser). However, when a "fun" claim is backed up with a pleasurable activity like biking to the Jersey Shore, it's hard to begrudge any organization for taking poetic license—especially after learning that Bicycling magazine named BIKE MS: CITY TO SHORE RIDE the “Best Cycling Getaway in NJ.”

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  • 1. MORE  THAN  A  RIDE   These  days,  wordplay  between  "fun"  and  "fundraiser"  is  ubiquitous  (almost  as  much  as   "friend"  and  "friend-­‐raiser).  However,  when  a  "fun"  claim  is  backed  up  with  a   pleasurable  activity  like  biking  to  the  Jersey  Shore,  it's  hard  to  begrudge  any   organization  for  taking  poetic  license—especially  after  learning  that  Bicycling  magazine   named  BIKE  MS:  CITY  TO  SHORE  RIDE  the  “Best  Cycling  Getaway  in  NJ.”                 Naturally,  it  is  easier  for  organizations  to  raise  critical  funds  when  the  associated  events   combine  attractive  features  such  as  recreation,  fitness  and  laid-­‐back  social  interaction.   Bike  MS  is  a  shining  example  of  how  this  tactic  works.   Says  Ian  Harris,  a  nine-­‐year  veteran  of  City  to  Shore,  “It’s  the  best  way  to  show  support   for  the  people  we  love,  living  with  MS—in  our  own  circles,  and  also  to  the  14,000  people   diagnosed  with  multiple  sclerosis  in  the  Delaware  Valley.”       The  ride,  which  takes  place  September  28-­‐29,  is  as  much  pleasure  as  it  is  purpose.     “From  the  pre-­‐ride  pasta  dinner,  to  bike  prep,  to  the  gorgeous  stretches  of  New  Jersey   countryside,  to  the  large  number  of  fans  who  come  out  to  urge  us  on  along  the  way,   and  the  final  feast  when  it’s  all  over,”  says  Harris.  “The  ride  is  a  gratifying  and  unifying   experience.”     Not  everyone  views  a  150-­‐mile  ride  in  unpredictable  weather  as  "fun,"  but  those  who  do   (7,000+  cyclists),  find  inspiration  in  the  people,  and  the  cause,  they're  riding  for.    This   quote  lifted  from  Screens  'N'  Spokes'  team  page  states  this  perspective  very   memorably:     "We've  formed  a  team  for  Bike  MS  because  we  know  that  riding  150  miles  is  nowhere   near  as  difficult  as  confronting  a  lifetime  with  multiple  sclerosis."   In  case  you're  not  sure  what  "a  lifetime  with  MS"  looks  like,  here's  a  not-­‐so-­‐pleasant   primer:     ✓ Currently  in  the  Delaware  Valley,  there  are  14,000  people  diagnosed  (and  experiencing   symptoms)  with  MS   ✓ There  are  currently  between  350,000  to  500,000  people  in  the  US  who  have  been   diagnosed  with  MS,  and  200  people  are  diagnosed  with  the  disease  every  week  
  • 2. ✓ Most  people  are  diagnosed  between  the  ages  of  20  and  50,  very  active  years  in  a   person's  life   ✓ Drug  treatment  (Disease  Modifying  Drugs  or  DMDs)  costs  average  $62,000  a  year   nationwide;  around  $45,000  here  in  the  Delaware  Valley.  As  you'll  read  here,  DMDs  are   critical  for  MS  patients   ✓ About  85  percent  of  those  who  are  newly  diagnosed  have  the  relapsing-­‐remitting  form   of  MS.   ✓ Without  disease-­‐modifying  therapy,  about  50  percent  of  those  diagnosed  with   relapsing-­‐remitting  MS  will  become  progressive  at  10  years.   ✓ Without  disease-­‐modifying  therapy,  about  one-­‐third  of  those  diagnosed  with  relapsing-­‐ remitting  MS  will  be  using  a  wheelchair  at  20  years.   ✓ There  are  only  three  FDA-­‐approved  oral  drugs;  the  rest  necessitate  injections.  One  of   the  more  recent  drugs  is  Tecfidera,  which  cost  several  hundred  million  dollars  to  develop.     ✓ Mental  side  effects  (such  as  depression,  loss  of  confidence,  a  sense  of  lost  bodily   control)  often  go  undiagnosed   ✓ Spending  for  breast  cancer  research  is  approximately  8x  that  of  MS   ✓ There  is  no  cure  for  MS,  only  treatment  to  slow  down  the  disease's  progress   Diagnosing  MS  is  not  easy.  Many  people  experience  symptoms  that  don't  get  labeled  as   multiple  sclerosis  until  years  later.  Some  can  go  months  or  years  without  experiencing   symptoms.  Not  knowing  when  another  spasm,  episode  of  blurred  vision,  loss  of  balance,   numbness  or  tingling,  or  sensation  of  weakness  in  an  arm  or  leg,  will  occur  can  cause   anxiety.  In  some  cases,  it  can  also  hold  people  back  from  enjoying  their  favorite   physical  activities.  But  despite  the  doom  many  MS  patients  and  their  loved  ones  feel,   good  things  are  happening  and  a  growing  number  of  MS  patients  are  living  satisfying   lives.  Much  of  this  is  due  to  the  advances  in  research,  made  possible  through  donations,   sponsorship  and  fundraisers  organized  by  the  National  Multiple  Sclerosis  Society   (NMSS)  and  similarly  aligned  nonprofits.     The  positive  energy  emanating  from  men  and  women  who  have  been  fortunate  enough   to  continue  leading  fairly  normal  lives,  makes  the  fight  for  increased  research  dollars   and  reduced  medication  costs  worthwhile.  Mind  over  matter  doesn't  lesson  the  burden   and  discomfort  of  MS,  but  it  does  make  the  ride  feel  manageable.     In  2012,  Bike  MS  cyclists  have  covered   5,396,000  miles  across  the  country  and   raised  $83.6  million.    This  is  critical  because   without  a  constant  supply  of  funds,  finding  a   cure  for  MS  would  be  even  more  impossible   than  it  already  is.  Locally,  riders  are  making   an  impact.  In  2012,  City  to  Shore    raised  $5.6   million  the  campaign  is  predicted  to  raise  
  • 3. another  $5.6  million  in  2013.  The  power  of  pedaling  is  being  felt  here  in  the  Delaware   Valley,  and  across  the  country.  Just  this  week,  the  US  Food  and  Drug  Administration   (FDA)  has  approved  a  new  clinical  trial  of  a  groundbreaking  strategy  using  stem  cells  for   the  treatment  of  MS.   It's  this  transformation  of  a  simple  act—riding  a  bike—that  keeps  riders  like   Montgomery  County's  Harris,  active  all  year  long,  and  year  after  year.       Over  the  past  nine  years,  Harris  has  joined  the  Great  8  team,  and  fellow  riders  locally,   for  Ride  MS  events  across  the  country.  Like  many  participants,  he  has  a  group  of  friends   who  come  together  annually  to  tackle  the  turf,  catch  up  on  life  happenings,  laugh   (through  the  grunting)  and  honor  those  suffering  from  this  debilitating  disease.  Earlier   this  month,  he  pedaled  his  way  around  Lake  Ontario  (one  of  many  Great  Lakes   Breakaway  rides),  and  after  the  upcoming  City  to  Shore  Ride,  he'll  hit  NYC  in  October   for  another  Ride  MS'  fundraiser.     Because  City  to  Shore  is  on  his  home  turf,  Harris  has  been  able  to  include  family,  as  well   as  a  close  circle  of  friends,  in  the  weekend,  renting  a  house  at  the  Jersey  Shore,  so  that   everyone  can  be  together  and  share  the  experience  as  a  rider  or  a  spectator.     “I  like  to  think  of  it  as  a  family  reunion  with  a  twist,”  he  says.  “It’s  an  incredibly  uplifting   time,  and  every  year  our  circle  extends  a  little  bit  further  to  include  the  new  families   we’ve  met.”   As  with  many  NMSS  supporters,  Harris  joined  the  cause  after  learning  that  a  family   member  had  been  diagnosed  with  the  disease  at  age  20.  Unable  to  "fix  it,"  Harris   reached  out  to  others  familiar  with  MS,  and  also  researched  local  organizations  that   would  help  him  and  other  family  members  quickly  understand  the  disease's  physical   and  emotional  impact.  The  Greater  Delaware  Valley  Chapter  proved  to  be  a  valuable   resource.  So  much  so,  that  Harris  became  an  active  volunteer  and  later,  in  2008,  a   board  member.  And  though  he  doesn't  feel  too  good  about  boasting,  his  cycling   participation  has  earned  him  recognition  as  one  of  the  organization's  highest-­‐totaling   fundraisers.     Says  Harris,  "MS  is  a  different  behaving  disease.  Often  people  don't  understand  it,   because  in  most  cases,  you  can't  see  what  the  patient  is  feeling  inside.  But  when  you   meet  someone  with  a  progressive  case,  it  turns  your  whole  perspective  around."   One  of  the  ways  Harris  and  his  teammates  have  sustained  their  own   participation  and  been  able  to  contribute  substantial  dollars  to  local   and  national  MS  fundraisers  is  by  "thinking  like  a  business."  And,  he   points  out,  connecting  with  young  patients  and  their  circle  of   supporters.  Working  under  the  moniker,  Screens  'N'  Spokes,  the  team,   along  with  some  of  the  finest  rock  poster  artists  in  the  country,  has   created  a  line  of  vibrant,  edgy  screen-­‐printed  posters  (and  race   jerseys)  helping  them  gain  attention  by  graphics  enthusiasts  who  see   the  value  in  the  power  of  "awesome  art"  to  promote  a  good  cause.    
  • 4. Created  in  2007  to  benefit  the  Screens  'N'  Spokes  bike  team  in  the  MS150  City  to  Shore   ride,  this  tiny  non-­‐profit's—"2  people  and  their  families  and  friends"—mission  is  "raising   awareness  and  money  for  the  National  MS  Society  through  art,  music  and  bike  riding."   Since  printing  its  first  poster,  Screens  'N'  Spokes  has  raised  approximately  $10,000  a   year.     For  Harris,  this  is  just  a  start.     "Each  time  I  go  to  our  annual  [NMSS]  meeting,  I  meet  incredibly  sharp  people  who  can't   do  as  much  because  of  being  immobilized.  They  have  great  minds,  but  are  being  held   back  physically.  It's  easy  to  understand,  if  there  is  any  bitterness  or  anger.  Yet,  each   time  I  attend  these  meetings  or  participate  in  a  ride,  everyone  I  meet,  is  gracious  and   thankful.  MS  is  such  a  debilitating  disease.  Researchers  need  to  find  a  cure."     —   For  more  information  about  Screens  'N'  Spokes  team  member  Ian  Harris  and  the  rest  of   the  2013  Great  8  team,  visit  msgreat8.org.  To  keep  up  with  all  the  teams  participating   in  September's  Bike  MS:  City  to  Shore  ride,  click  here.  Registration  is  still  open,  so  if   you're  ready  to  Ride  for  MS,  NMSS  is  ready  for  you.