RARE Documentaries and Films

Screen Shot 2015-03-02 at 4.03.40 PMThe Life We Live One Year Later An inspiring documentary about the Spooner family and their amazing journey of perseverance and scientific discovery.
Representing: Exome Sequencing 
Life we LiveThe Life We Live A heart-felt documentary chronicling the Spooner family’s struggle, “The Life We Live” shares their battle to fight the rare disorder plaguing their two daughters. As a result of exome sequencing, the Spooners have discovered answers they have long been seeking.
Representing: Exome Sequencing
 June 2013.
Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system. The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.
April 2014.
Life According to SamLife According to Sam tells a story not only about the love of physician parents trying to save their son – it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world – all expected to live no longer than 13 years – to receive treatment and participate in a first-of-its-kind clinical trial.
October 2013.
HereUsNowGenMastheadHere. Us. Now.  is a documentary film chronicling the Hempel Family’s fight to bring medical innovation home.  Their identical twin daughters, Addison and Cassidy, have been diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease that causes progressive neurological deterioration.  The Hempels’ story reveals the grim truth that rare disease is all too commonplace.  It’s a broken system moving at a tedious pace, and it leaves heart-rending personal stories in its wake. 
September 2012.
Dusty's traiDusty’s Trail: Summit of Borneo.
An inspirational story about Dusty, a 20-year-old young man with Duchenne muscular dystrophy.  2013.
Driving BlindDriving Blind. With the prospect of losing their vision entirely, Tod and Justin have decided there are so many people/places/things in this country that they would like to see.
Representing: Choroideremia, a degenerative eye disease
Coming 2013.
Fight to LiveFight To Live. The film follows people suffering from different forms of debilitating, incurable diseases, and the fight they are in to gain access to drugs that may prolong their lives.
Representing: Drug Approval for the FDA Process
Cracking the Code of LifeCracking the Code of Life NOVA chronicles the race to reach one of the greatest milestones in the history of science: decoding the human genome.
Representing: Genetic Testing
extrordinaryExtraordinary Measures. This 2010 medical drama film is about parents who form a biotechnology company to develop a drug to save the lives of their children, who have a life-threatening disease. The film is based on the true story of John and Aileen Crowley, whose children have Pompe’s disease.
Representing: Glycogen Storage Disease-Pompe.
forkatyFor Katy. Katy is seven years old and has Phenylketonuria (PKU), a rare genetic disease in which the body cannot metabolize protein properly. Many in the world who are born with PKU are diagnosed at birth because of newborn screening. They are immediately put on lifelong treatment and are able to live normal, productive lives. Katy was not given that opportunity. She was born in Mexico, and at the time newborn screening was not required. Katy’s parents searched for answers for months after noticing that their daughter was experiencing unusual problems. She was eventually diagnosed with PKU at 13 months of age, but the months without treatment took their toll on her. Seven years later she has severe developmental delays. Katy is unable to share her story with her own words, but her parents speak up for her, to share her story, and to promote newborn screening across the world.
Representing: PKU (Phenylketonuria)
LorenzosoilLorenzo’s Oil.   Until about the age of 7, Lorenzo Odone was a normal child. After then, strange things began to happen to him: he would have blackouts, memory lapses, and other strange mental phemonenons. He is eventually diagnosed as suffering from ALD: an extremely rare incurable degenerative brain disorder. Frustrated at the failings of doctors and medicine in this area, the Odones begin to educate themselves in the hope of discovering something which can halt the progress of the disease.
Representing: ALD
thumb-onesheet-linkboxFeat.  Feat is a feature documentary chronicling one man’s coast-to-coast quest to run 63 marathons in 63 days for kids battling the rare, terminal disease ataxia telangiectasia, or A-T.
Representing: Ataxia Telangiectasia
lateral-films-key-of-g-humptyThe Key of G  THE KEY OF G is an award-winning feature documentary about disability, caregiving and interdependence. The film follows Gannet, a charismatic 22-year-old with physical and developmental disabilities, as he leaves his mother’s home to share an apartment with a close-knit group of artists and musicians who support him, not only as paid caregivers, but also as friends. Together they create a uniquely successful model of supported living, and a compelling alternative to institutionalized care.
Representing: Mowat-Wilson syndrome/ General Disability
404924084_640I Am a Visitor in Your World.  I AM A VISITOR IN YOUR WORLD features no interviews. The intention of the film is to be in contact with a different kind of perception. We witness the main character’s struggle with her disease first hand, raw. We follow her while she fights against a medical system, which penalizes the already penalized patients. We look at the love between her and her mother. In a way, the disease itself seems to play a secondary role. What we see is universal. It is a film about love.
Representing: Genetic Colon Cancer/ General Disability
images (1)Do You Really Want to Know? “Do You Really Want to Know?” is a documentary about the complex emotional, ethical and psychological issues surrounding the new frontier of predictive genetic testing. The film follows three families who have been confronted with the difficult decision of whether or not to be tested for Huntington’s disease – a degenerative neurological illness that is akin to having ALS, Schizophrenia and Alzheimer’s, and one of the first diseases people could be accurately and conclusively tested for, before the onset of any symptoms. As scientists discover more ways to identify diseases before we know we have them, “do you really want to know?” will be a question more and more of us will face.
Representing: Genetic Testing
537981_10151350465287413_614461645_nThe Magic Bracelet Rina’s spirit, passion and vision is her legacy. Her message of personal empowerment “Dream Big, Love Life, Be Positive” needs to be heard. It is a message of hope, a message of love, and a message of strength. The Magic Bracelet brings this message to the screen with warmth, humor, fantasy and a bit of pathos. It also educates and enlightens the audience on mitochondrial disease.
Representing: Mitochondrial Disease
ptPreserving Time. A short documentary about Stu, who is mid-way through the progression of Frontal Temporal Degeneration. His family shares their thoughts and emotions on his diagnosis in this short but touching film.
Representing: Frontal Temporal Degeneration
rareRare. RARE, a new feature documentary, follows an inspiring and extraordinary mother in a race against time as she unites a group of isolated people from around the world in a quest to cure her daughter’s rare genetic disease. Together, they discover that community, laughter and hope are some of the greatest therapies.
Representing: Hermansky Pudlak Syndrome
IMAGE1aNot Home.  A documentary about kids living in nursing facilities is a 99-minute feature documentary that focuses on four interweaving stories: Mathew, Qualeigh, Essie Evans and Nola Sayne – a young adult, a child and two parents whose separate lives intersect through the institutionalization of children with a developmental disability. In between each story are interviews from advocates, activists, elected officials and other parents facing similar challenges as well as a graphic montage of the condensed history of institutionalization in the U.S.
Representing: Disabled Minors in Nursing Homes
Project_SclerodermaProject Scleroderma: Beneath the Surface.  The documenterary Christy McCaffrey’s search for additional information and understanding about the disease that took her mother. It’s told by many others impacted by the disease and narrated by Saget.
Representing: Scleroderma
IAmBreathingI Am Breathing:  Within a year, Neil Platt goes from being a healthy 30 something British bloke, with a great sense of humour, to becoming completely paralyzed from the neck down, thanks to the devastating illness he has inherited, ALS/MND. As his body gets weaker, his perspective on life changes. His humour remains, but a new wisdom emerges:
Merch Girl That dual life of hospitals and honky tonks is at the heart of what filmmakers Cary Bell and Jessica Miller call a ‘personal case study infused with music,’ chronicling both Abbie’s grueling treatment and her life on the road with the John Evans B
rp-ride-of-life-documentaryRP The Ride of My Life  The Relapsing Polychondritis Awareness and Support Foundation is proud to announce the Premiere of a long hoped for story of the challenges, disappointments, hopes and dreams of living a life with purpose while suffering from the rare disease Relapsing Polychondritis. Presenting in its Entirety: “RP The Ride of My Life” A documentary about Relapsing Polychondritis, a rare autoimmune disease. Watch it here.
Special Blood 
Four patients with a dramatic, rare disease fight to live normal lives. Faced with a life-threatening condition, they join together to conquer adversity, finding strength in each other and their small but strong community. Special Blood is an intimate look into the personal lives and struggles of rare disease patients in America.  Watch it here.
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The Lions Mouth Opens
A documentary on young actress, Marianna Palka, as she confronts her risk of Huntington’s Disease.  Watch it here.

In Crystal Skin  Synopsis In Bogotá, Colombia, a charismatic eleven year old named Maria Alejandra struggles to maintain a normal childhood despite the limitations imposed by a rare skin disease. Conflict between mother and daughter arises when Maria refuses to attend school early one morning. Watch it here.