Logan Smalley was a counselor at a 'Project REACH' camp, a facility set up to give the experiences of being at camp to children with disabilities, when he met Darius Weems. He had first met Darius' brother Mario, who was himself suffering from Duchenne muscular dystrophy. Mario asked Logan to "look out for my little brother," and Logan took that promise to heart.[7][9]
After reading a copy of a letter Darius had sent to MTV's show Pimp My Ride in which he asked them to consider refurbishing his wheelchair, Smalley organized a cross-country trip for Darius to Los Angeles, which became known as the Darius Goes West Project. After having previously been to the Cannes Film Festival, Smalley recognized the opportunity and importance of documenting the trip. The 7,000 mile, 25-day trip resulted in 300 hours of video.[9]
According to DVD Talk, "including Weems, over half of the documentary team was under the age of 20, including Smalley's younger brother Ben, 18. The oldest person on the crew was Daniel Epting, 24. The group not only handled the camera and sound equipment, they cared for Weems, helping him with day-to-day tasks like using the bathroom."[10]
The documentary was dedicated to Darius's brother, Mario, who also had Duchenne muscular dystrophy.[7] Mario died at age 19[8][11] in 1991.[12]
Synopsis
The film revolves around Darius Weems, a teenager with Duchenne muscular dystrophy, who, because of his disease, had never left his hometown of Athens, Georgia. In the summer of 2005, with the help of eleven young friends, 15-year-old Darius embarked on a road trip across the United States, with the goal of reaching Los Angeles in the hopes of appearing on MTV's show Pimp My Ride in order that Darius's old and worn-out wheelchair might be customized on the hit show. The group traveled in an RV and tested wheelchair-accessibility across America during the course of their trip.[3][4][7][13]
In the end, Pimp My Ride denied the request for Darius's wheelchair to be "pimped out." But near his hometown of Athens, Georgia, a local car customizing dealer created a new design for Darius's wheelchair, which included a television, speakers, and connection for an iPod. The most symbolic part of the new wheelchair was wheel spinners; this was the one thing Darius wanted most, because they would keep spinning even if he stopped.
In 2008-2009 Darius and his crew spent an entire year going back on the road visiting middle schools, high schools, and colleges and hosting screenings all over the country. In May–June 2012, Darius took a 32-day "Believe" tour of the northeast, where he performed raps and hosted Q&As at 18 schools. In Maine, Cynthia McFadden and the ABC Nightline crew followed Darius to two schools and devoted an entire show to Darius and his continuing quest to raise awareness of DMD on Thanksgiving of 2012.
Darius turned 23 on September 27, 2012, and wrote a rap about it that he called a tribute to all of his fans. The single, "Thank You For 23," made it to #35 on iTunes in the hip hop genre. On February 16, in honor of his late brother Mario's birthday, Darius released his first album, "My Life In This Chair."
On October 9, 2016, at the age of 27, Darius Weems died due to DMD related complications.[12]
Charley's Fund
All proceeds from the film go to Charley's Fund, named for DMD sufferer Charley Seckler, and set up as a non-profit foundation investing in scientific research to help cure DMD.[6][11][13] The filmmakers had originally hoped the film might raise $70,000 for DMD research, but by March 2009 they had raised $1.5 million,[14] and by June 2009 they had raised $2 million.[15][16]
Robert Kohler of Variety wrote "Certain to stir hearts -- as proven by its aud award at the Santa Barbara Fest -- and primed to raise awareness of a debilitating form of muscular dystrophy, Darius Goes West: The Roll of His Life lovingly records 15-year-old Darius Weems' odds-defying cross-country U.S. trek. A rare case of an almost purely amateur film that has a solid shot of cablecasts after a certain roll through the fest circuit, pic makes up in authentic feeling what it lacks in documentary skill."[1]
David Cook of The Chattanoogan made note of the compassion shared by the eleven friends toward Darius, writing "Teenage males are so often viewed as unemotional and stoic, as young Rambos in training. But this film highlights the deep love these friends had for each other, and for Darius." Cook also commended the care and consideration of the friends: "Unable to move most of his body, he [Darius] depended on his comrades as they lifted him into bed each night, carried him into the Gulf as he touched the ocean for the first time, sat together on the edge of the Grand Canyon, held on as they wheelchaired down Lombard Street in San Fran, advocated and fought against the lack of wheelchair accessibility in the US, and wept in the face of Darius’s crippling disease and impending death." He praised them further, "They were as graceful and compassionate caregivers as I have ever seen, and if you are looking for role models or hope in dark times, look no farther than this film and these men."[4]
Martin Bashir of ABC NewsNightline reported upon meeting Darius at the Santa Barbara Film Festival in 2007 that he felt like he was interviewing his own brother Tommy, who had also been born with DMD: "The shape of his head and torso were identical. The chubby cheeks and sneaky smile were the same. And the endless attempts to shift his bulbous arms, and get comfortable in his wheelchair, were an exact replica of Tommy. But this wasn't my brother. Sadly, Tommy passed away in January 1991. This was Darius Weems from Athens and this is what Duchennes Muscular Dystrophy does to the body." He called the documentary "remarkable" in how it "records a journey that is full of happiness and heartbreak," and, in recalling his reactions to other documentaries, concluded, "when I watched Darius Goes West something altogether more profound happened. I saw my brother again - and for that alone, I always shall be grateful."[13]
Karen Day of the Los Angeles Times wrote, "Thanks to Smalley's editing and Darius' star quality, the documentary and its back story through development and disease make Darius Goes West play more like a hip indie film. Smalley, who also composed and plays the piano soundtrack, and his gang bankrolled the $70,000 film by selling on-screen credits for $10 each and having a hometown barbecue fundraiser." She praised the film by calling it a comical and poignant tale that was equal parts Animal House and Stand by Me.[8]
David Walker of DVD Talk called the documentary "a collective labor of love, put together by a dedicated group of people committed to changing the world," writing that "Film at its best has the power to engage us emotionally and spiritually," and that "that is what makes the documentary Darius Goes West: The Roll of His Life not only a great film, but the best film of 2007." He concluded that "the film is an amazing celebration of life" and "one of the most life-affirming films you will ever see."[10]
Recognition
As a Quality of Life 2008 finalist, Darius Weems received a $25,000 Volvo for Life Award,[17] as well as a $15,000 World of Children Founders Youth Award, and a $2,000 Gloria Barron Prize for Young Heroes.
In May 2009, Darius was selected for $10,000 award from DoSomething.org,[18] and in June, he and the filmmakers were honored at the Do Something Awards celebration held on June 4 at Harlem’s Apollo Theater.[19] Weems has donated all monies to Charley's Fund.
A supporter of the film established the Darius Weems Scholarship in December 2008, to support an incoming freshman at Yale University.
WXIA-TV presented Logan Smalley with the 11 Alive Community Service Award. Their coverage of the film received an Emmy Award nomination.
Darius Weems and Logan Smalley were invited to speak at the 2009 TED Conference Fellowship.[20]
In April 2009, the Council for Exceptional Children presented Darius Weems with their 2009 Yes I Can Award.
Awards and nominations
As of June 2009, the film had won an unprecedented 28 film festival awards, and at the Tribeca Film Festival it was the only film chosen by Robert De Niro to screen at his children’s school during the festival. Among the awards won at film festivals are:
Won Jury Award for Best Documentary at Sidewalk Film Festival
Won Audience Choice Award at Sidewalk Film Festival
Won Audience Choice Award at Ojai Film Festival
Won Youth Jury Award for Best Documentary at Viewfinders International Film Festival for Youth
Won Runner Up for Best Documentary at BiNational Film Festival
Won Jury Honorable Mention for Best Documentary at Picture This Film Festival
Death
On October 9, 2016, Darius Weems died due to Duchenne Muscular Dystrophy-related cardiopulmonary failure. Plagued with a persistent cough, Weems was checked into Athens Regional Medical Center by his sister Maroneisha Robinson on Friday, October 7. During his visit, Darius's symptoms quickly worsened, causing him to be transferred to the Medical Center's ICU.[21]
Related Research Articles
Muscular dystrophies (MD) are a genetically and clinically heterogeneous group of rare neuromuscular diseases that cause progressive weakness and breakdown of skeletal muscles over time. The disorders differ as to which muscles are primarily affected, the degree of weakness, how fast they worsen, and when symptoms begin. Some types are also associated with problems in other organs.
Muscular Dystrophy Association (MDA) is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, MDA accelerates research, advances care, and works to empower families to live longer and more independent lives. Renowned for The MDA Labor Day Telethon, the annual telecast aired live from 1966 to 2010 and was hosted by Jerry Lewis, who also served as MDA's national chairman.
Dystrophin is a rod-shaped cytoplasmic protein, and a vital part of a protein complex that connects the cytoskeleton of a muscle fiber to the surrounding extracellular matrix through the cell membrane. This complex is variously known as the costamere or the dystrophin-associated protein complex (DAPC). Many muscle proteins, such as α-dystrobrevin, syncoilin, synemin, sarcoglycan, dystroglycan, and sarcospan, colocalize with dystrophin at the costamere. It has a molecular weight of 427 kDa
Duchenne muscular dystrophy (DMD) is a severe type of muscular dystrophy that primarily affects boys. Muscle weakness usually begins around the age of four, and worsens quickly. Muscle loss typically occurs first in the thighs and pelvis followed by the arms. This can result in trouble standing up. Most are unable to walk by the age of 12. Affected muscles may look larger due to increased fat content. Scoliosis is also common. Some may have intellectual disability. Females with a single copy of the defective gene may show mild symptoms.
Moonrise is a 2003 book written by Penny Wolfson. The full name refers to her family and her son, Ansel, who struggled throughout life with Duchenne muscular dystrophy. The book was based on an article the author wrote for The Atlantic in 2001, which received a national magazine award.
Sarepta Therapeutics, Inc. is a medical research and drug development company with corporate offices and research facilities in Cambridge, Massachusetts, United States. Incorporated in 1980 as AntiVirals, shortly before going public the company changed its name from AntiVirals to AVI BioPharma soon with stock symbol AVII and in July 2012 changed name from AVI BioPharma to Sarepta Therapeutics and SRPT respectively. As of 2023, the company has four approved drugs.
Clarke Central High School (CCHS) is located in Athens, Georgia, United States. In 1970, Clarke County schools were desegregated, and the high school for black children, Burney-Harris High School, and the high school for white children, Athens High, merged to establish Clarke Central. Classes in the newly formed school began in 1971.
Dame Kay Elizabeth Davies is a British geneticist. She is Dr Lee's Professor of Anatomy at the University of Oxford and a Fellow of Hertford College, Oxford. She is director of the Medical Research Council (MRC) functional genetics unit, a governor of the Wellcome Trust, a director of the Oxford Centre for Gene Function, and a patron and Senior Member of Oxford University Scientific Society. Her research group has an international reputation for work on Duchenne muscular dystrophy (DMD). In the 1980s, she developed a test which allowed for the screening of foetuses whose mothers have a high risk of carrying DMD.
Mike McCullough is a former Canadian football linebacker who played ten seasons for the Saskatchewan Roughriders of the Canadian Football League (CFL). McCullough was drafted by the Roughriders in the third round of the 2003 CFL Draft, after playing his college football at St. Francis Xavier University.
Wayne Joseph Keeley is an American practicing attorney, author, professor, producer and director. He has produced, written, and directed documentaries, commercials and educational programs, in addition to screenplays, stage plays, and teleplays.
Prudence Mabhena is a Zimbabwean singer. Prudence Mabhena was born with Arthrogryposis, and was severely disabled. The society she was born into considers disabilities to carry the taint of witchcraft. Because of this, she was abandoned by her family. As a result, she was raised by her maternal grandmother who sang to her while working on her farm. She later attended King George VI School for the disabled in Bulawayo.
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Eteplirsen is a medication to treat, but not cure, some types of Duchenne muscular dystrophy (DMD), caused by a specific mutation. Eteplirsen only targets specific mutations and can be used to treat about 14% of DMD cases. Eteplirsen is a form of antisense therapy.
Nikki Fox is an English broadcaster, presenter and documentary maker. She is a Sony Award-winning journalist who presents for television and network radio. Fox appeared on various TV and Radio shows including Watchdog, The One Show, How to Look Good Naked, and Rip-Off Britain. She is one of the first female disabled TV presenters in the world and has been voted one of the most influential disabled people in the UK.
Sunil Pradhan is an Indian neurologist, medical researcher and writer, known for the invention of two electrophysiological techniques. He has also described five medical signs, of which one related to Duchenne muscular dystrophy is known as Pradhan Sign, and the others associated with facioscapulohumeral muscular dystrophy (FSHD) and similar neuro diseases. The Government of India awarded him the Padma Shri, the fourth highest civilian award, in 2014 for his contributions to the field of neuroscience.
The goal of physical and occupational therapy in Duchenne muscular dystrophy is to obtain a clear understanding of the individual, of their social circumstances and of their environment in order to develop a treatment plan that will improve their quality of life. Individuals with DMD often experience difficulties in areas of self-care, productivity and leisure. This is related to the effects of the disorder, such as decreased mobility; decreased strength and postural stability; progressive deterioration of upper-limb function; and contractures. Occupational and physical therapists address an individual's limitations using meaningful occupations and by grading the activity, by using different assessments and resources such as splinting, bracing, manual muscle testing (MMT), ROM, postural intervention and equipment prescription.
Jesse's Journey is a Canadian charity focused on funding research into Duchenne muscular dystrophy. Founded in 1994 and named for Jesse Davidson, Jesse's Journey is based out of London, Ontario, with a satellite office in Montreal, Quebec. Jesse's Journey is the only Canadian charity that solely exists to fund research into Duchenne.
David Gardner-Medwin was a British physician who worked as a paediatric neurologist in Newcastle upon Tyne, serving as the only neurologist for children for a population of 3.5 million. He is credited with introducing multidisciplinary care to the management of boys with Duchenne muscular dystrophy (DMD). When he retired at the age of 60, four consultants were appointed to replace him.
Toshifumi (Toshi) Yokota is a medical scientist and professor of medical genetics at the University of Alberta, where he also holds the titles of the Friends of Garrett Cumming Research & Muscular Dystrophy Canada Endowed Research Chair and the Henri M. Toupin Chair in Neurological Science. He is best known for his pioneering research in antisense therapy for muscular dystrophy that led to the development of an FDA-approved drug viltolarsen. His research interests include precision medicine for muscular dystrophy and genetic diseases. He has co-edited three books published in the Methods in Molecular Biology series from Humana Press, Springer-Nature, and has published more than 100 refereed papers and patents. He is a fellow of the Canadian Academy of Health Sciences, a member of the editorial boards for the International Journal of Molecular Sciences, Genes, Frontiers in Genome Editing, Frontiers in Physiology, and Nucleic Acid Therapeutics, a member of the Medical and Scientific Advisory Committee of Muscular Dystrophy Canada, and a co-founder of the Canadian Neuromuscular Network (CAN-NMD).
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