Learning from Darius: Important Lessons for Future Health Professionals

1. Learning from Darius:Important Lessons for Future Health Professionals Claudia Senesac, PT, PhD, PCS Roxanna Bendixen, PhD, OTR Barbara Richardson, PhD, RN

2. 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.

3. 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

4. DIAGNOSIS • Blood tests: elevated CK levels • Muscle biopsy • Clinical signs: • Gower’s sign, weakness, coordination problems, • clumsiness, enlarged calfs

5. Weakness Pseudo-hypertrophy Enlarged calf muscles Postural changes Coordination problems Instability Impaired mobility Gower’s sign

6. Darius Goes West: The Progression

8. 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

9. 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

10. Darius at UF Committee

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

12. 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

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

36. 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

37. 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

38. 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

39. 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

40. 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!!!

41. 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(:

42. 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/