Learning from Darius: Important Lessons for Future Health Professionals

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Learning from DariusImportant Lessons for
Future Health Professionals

• Claudia Senesac, PT, PhD, PCS
• Roxanna Bendixen, PhD, OTR
• Barbara Richardson, PhD, RN

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So Who Is Darius?

• A documentary film star
• A rapper
• A 20 year old African American male from Georgia
  with Duchenne Muscular Dystrophy (DMD)
• A sibling to a brother who died from the disease
  at age 19
• A major fund raiser for DMD research
• The Jerry Lewis replacement for our times
• An award winner and hero to many.

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DUCHENNE MUSCULAR DYSTROPHY

• Most common human muscular dystrophy
• Effects skeletal and cardiac muscle
• Protein dystrophin absent or abnormal
• X linked recessive disorder
• 1 in 3,500 male births
• Shortened life span
• NO CURE-100 lethal

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DIAGNOSIS

• Blood tests elevated CK levels
• Muscle biopsy
• Clinical signs
• Gowers sign, weakness, coordination problems,
• clumsiness, enlarged calfs

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Weakness
Pseudo-hypertrophy Enlarged calf muscles
Postural changes Coordination problems Instability
Impaired mobility Gowers sign
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Darius Goes West The Progression
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How and Why Did UF Join the Movement?

• Raising Awareness of Duchenne Muscular Dystrophy
  through Darius Goes West
• Committed faculty with expertise in DMD and
  knowledge of the Darius movie and screenings
• Interdisciplinary group of students from College
  of Public Health and Health Professions and from
  throughout campus
• Strong university and community support
• Lots and lots of volunteers
• Commitment to integrate lessons into curriculum
• Support from University of Florida AHEC Program

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DGW Committee Activities

• Darius Goes West Committee (2x/month)
• Faculty, staff, students, community involvement
• Presentations to UF and Community
• Student groups UF Classes Grand Rounds Rotary
  Clubs
• Flyers
• DGW Run DGW Screening Event

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Darius at UF Committee
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Sponsors

• Area Health Education Centers (AHEC)
• Clinical and Health Psychology
• Communicative Disorders
• Dr. Perri and the Deans Office
• Interdisciplinary Family Health Program
• Occupational Therapy
• Physical Therapy
• Shands Rehabilitation at UF
• Alachua County School Board

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DGW Student Activities

• Networking
• Student groups Fraternity/Sorority
• Fund raising
• DGW Run and Screening T-shirt design and sales
• Manpower
• DGW Run Behind the Scenes
• Advertisement
• Handout and post flyers Chalking E-mail
  list-serves Facebook Twitter

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Darius at University of Florida 9-10-09
Darius Goes West
Athens, GA
LA
Run for Darius 8.29.09
DGW
Be a vehicle for a cure! Duchenne Muscular
Dystrophy
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Darius Event Outcomes at UF

• Hundreds of volunteers (faculty, staff, students,
  UF athletes and community) worked together to
  raise awareness about DMD.

• Over 30 educational programs were held on campus
  reaching about 3,000 students.

• 1,600 people watched the DGW movie at the Center
  for Performing Arts largest screening

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More Positive Outcomes

• Opportunity for students and faculty to interact
  more closely with Darius and Crew at a Behind the
  Scenes event the following afternoon several
  hundred attendees late on a Friday afternoon

• Over 7,000 raised from DVD sales donations at
  screening and 27,000 overall
• New educational seminars convened for MPH
  students on genetic issues in public health and
  public health and disability

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Lessons Learned from DGW

• The obstacles faced for persons in wheelchairs in
  multiple settings across the country and the
  challenges of living with DMD
• The achievements that can be realized through
  united efforts involving people of all ages and
  backgrounds

• The power of volunteering, strong friendships
  community support

• The importance of DMD research the need for a
  dynamic spokesperson that can reach younger
  audiences

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Possible AHEC Uses of DGW

• Distribution of the DVD or Play It Forward Link
  to middle and high school classrooms
• Development of discussion questions for teachers
  to use
• Sharing of curriculum with health professions
  faculty and students

• Consideration of DGW and DMD research in
  fundraising efforts for state and national
  events, like HOSA
• Participation with multiple disciplines,
  community partners, and volunteers in hosting DGW
  event

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On Darius Facebook Wall

• My brother's dream was to play soccer, but with
  this disease he cant run or walk smoothly, i just
  wanna say thank you for this, it means a lot
• We just watched the movie in science class
  because we're learning about genetics..... Darius
  I think you are amazing and your crew too. keep
  it up guys and maybe one day you will come to my
  school!
• Thank you Darius for coming to Madison County
  Middle School today!! You are a REAL HERO!!!

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• May 20, 2010 Postings
• i watched this movie in skool today and it was
  wonderful i almost cryed it taught me alot like
  never take things for granted and be thankful for
  wat u have and that the sky is the
  limit.....R.I.P to your brother and that lil boy
  dat have it now how is he doing?

so one day my teacher decided we were going to
watch your movie and let me tell you something it
was the best movie have seen all year!! it was
very inspirational and moving and im glad she had
us watch it i even cried the second time i
watched it keep moving darius your so amazing!!
oh and by the way your really funny... too( well
keep strong dude keep strong(
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Dude, I saw your video in my Science class, I
think what you are doing is awesome. I hope you
keep up the awesomeness and enjoy your pimped out
chair. Just showed the movie to my high school
students (alternative school). WOW! What a great
message! The fact that he has been able to
maintain a positive attitude regardless of the
obstacles he has had to overcome is remarkable.
Just want Darius to know that he has touched us
all and now has major fans in Gastonia, North
Carolina.
http//www.dariusgoeswest.org/
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