TWINS AFFLICTED WITH CYSTIC FIBROSIS FEATURED IN THE POWER OF TWO, AN INTIMATE, COMPASSIONATE PORTRAIT OF SISTER-ADVOCATES FOR ORGAN TRANSPLANTATION
Triumph of Sibling Transplant Recipients Is Subject of Insightful Profile By Director Marc Smolowitz to Premiere in Los Angeles and New York in DocuWeeks™ 2011
“The beauty of advocacy, the power of advocacy, is that it can start with one person,” says U.S. Assistant Secretary of Health Howard Koh. “In this case, two people.”
THE POWER OF TWO is the inspirational tale of San Francisco Bay Area-based twins who refuse to let a disabling and life-shortening illness get in the way of their quest for a better life. Isabel “Isa” Stenzel Byrnes and Anabel “Ana” Stenzel are biracial twin sisters both born with cystic fibrosis and gifted with “gaman” — the Japanese word for perseverance, which has helped them thrive despite their disease. Called to action by their life-saving double lung transplants, they strive to help those still in need of organ transplants and those suffering from CF live improved lives.
The poignant directorial debut of Academy Award®-nominated producer Marc Smolowitz (“The Weather Underground”), THE POWER OF TWO, which is inspired by the Stenzels’ memoir (“The Power of Two: A Twin Triumph Over Cystic Fibrosis”), is an affectionate, passionate and insightful documentary that takes the viewer in several directions: first into the home lives of the twins and the constant medical care they were compelled to undertake; then to their crusade in Japan, where CF is rare and organ transplantation a cultural taboo; and finally thriving with their new lungs and mentoring others on the same path while also experiencing some of their own unexpected life milestones.
THE POWER OF TWO will premiere theatrically in both New York and Los Angeles as part of the International Documentary Association’s 15th Annual DocuWeeks™ Theatrical Showcase at the IFC Center and the Laemmle Sunset 5 respectively. The film will open in New York on August 26th and in Los Angeles on August 19th.
With three double-lung transplants between them, the sisters present a picture of resilience, fortitude and a window into the plight of sufferers of cystic fibrosis, an inherited disease that causes a thick, sticky mucus to form in the lungs, pancreas and other organs. In the lungs, this mucus blocks the airways, causing lung damage and making it hard to breathe. There is no cure for CF; for many CF sufferers, including the Stenzel twins, lung transplantation is the only route to survival.
As viewers learn from one of the film’s many experts, Dr. Francis Collins — director of the National Institutes of Health and co-discoverer of the cystic fibrosis gene — CF is the most widespread, potentially fatal genetic disease among people of northern European descent; the sisters, born to a Japanese mother and German father, together have formed a united front against their affliction. Being twins and being sick was “transformative” when they were younger, says Ana Stenzel. “We became our own friends, teachers, personal therapists.”
Smolowitz’s documentary takes the viewer further into their remarkable story and adulthood – their emergence as authors, athletes (at the National Kidney Foundation U.S. Transplant Games, for instance) and as advocates. Augmenting the story of the Stenzels is their younger friend Anna Modlin, whose survival depends on a long-sought pair of donor lungs; Anna’s mother, Robin, who reflects on the experience of having a child with CF; and a Japanese father, Kazuyuki Tanaka, whose choice to donate his daughter’s organs made continued life possible for a number of people. “Seven of her organs are now glistening like jewels across the country,” he says through tears.
At the crux of a rising movement to change laws and stigmas, Ana and Isa embark on a 10-city tour of Japan to inspire change in the hearts and minds of a culture resistant to transplantation. While Japan is a wealthy, medically advanced nation, it is the industrialized nation with the lowest rates of organ donation due to religious and cultural beliefs as well as ethical concerns tainting the first heart transplant in Japan.
Though organ donation is much more common in the United States than in Japan, according to recent statistics, 110,000 Americans currently need life saving organ transplants and an average of 18 men, women and children die each day while waiting for an organ. While the number of organ donors in the U.S. is increasing overall, only 37% of Americans 18 and over are registered donors.
“Any individual or family can be impacted by an acute or chronic illness whereby organ donation and transplant might be the only solution available to save a person’s life,” Smolowitz says. “THE POWER OF TWO shows audiences that when our healthcare systems work, they can actually save patients’ lives. It also reminds us that by saying ‘yes’ to organ donation, we’re all implicated in one of the most universal decisions a person can make to save the life of another.”
Featuring archival footage and probing expert interviews, THE POWER OF TWO presents a multi-faceted portrayal of triumphs in modern medicine and also a society at a medical tipping point (Japan). It examines in affectionate detail the relationships between individual CF sufferers, relationships between organ recipients and their donor families and even the spiritual bond between the recipients and the deceased donor who has made a better life attainable through their own act of generosity.
THE POWER OF TWO is directed by Marc Smolowitz and is produced by Smolowitz and Andrew Byrnes. The executive producer is Chris Kelly; the director of photography is Nickolas Dylan Rossi. The editors are Thomas Eugene Green and Matthew Sultan; the original music is by Tim Easton and Kyle Moorman.
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