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Awareness is key to realizing AFTD’s mission – and when people share stories of the impact FTD has had in their lives in a public fashion, it goes such a long way toward teaching others about this disease. When their friend Laury Sacks began to experience symptoms of what would later be diagnosed as the primary progressive aphasia form of FTD, she enlisted her friends Pamela Hogan and Connie Shulman (best-known for her role as the character Yoga Jones on Netflix’s Orange Is the New Black) to document her and her family’s journey with FTD.
The film has earned a very positive reception. On its premier in March 2015, it drew positive coverage from the New York Times, the Boston Globe, NPR, Psychology Today, People, and other widely-read sources. In late April, Looks Like Laury received an award from the American Academy of Neurology for a 5-minute version of the film. Producer Pamela Hogan presented the film to hundreds of neurologists at their awards lunch in Washington, D.C.
And media coverage has continued. A feature on Looks Like Laury will soon be the cover story for Neurology Now’s June/July publication, with co-producer Connie Shulman featured on the magazine’s cover. This will coincide with the release of Season 3 of Orange Is the New Black, bringing further awareness of FTD to a growing audience. We had a chance to talk to Pamela and Connie about the impact of their film, and ways our community might engage further.
AFTD: The film has had powerful impact in how it raises awareness. It’s been striking to see major news sources that hadn’t previously dedicated coverage to FTD taking on the topic. How have you seen media perspectives on this disease evolving as you’ve shared this story?
CONNIE: The media coverage has been beyond remarkable. The media gets it. Knows the importance… and is spreading the word. Did I say it has been remarkable!!!
PAM: The press response has been so wonderful! A number of writers seem to be responding to the film’s message about the healing power of women’s friendships. And many of the writers have started the interview by asking us the difference between Alzheimer’s and FTD, so we are definitely seeing the media becoming better informed. I’ve also been moved to learn that many of the journalists we’ve spoken to have a loved one with some form of dementia or other life-changing condition, and themselves are grappling with some of the challenges that Laury and her loved ones faced.
AFTD: Have you heard personal reactions from people diagnosed with FTD, from family members and others impacted?
CONNIE: We did an online screening with an open chat, so had an opportunity to watch this film with a community … either knowing someone with FTD or in early stages themselves. It was incredibly moving and showed me firsthand how important a film like this is. The need to not feel alone is huge when dealing with dementia. It is a devastating disease and so very isolating and I could see how important an exchange of stories, a support system, a community of friends/family is for the caregivers, the families, the friends, and the individual who is ill. The sharing of information is essential and to have a group where one can vent their frustrations and sort out the options and find an empathetic ear. I saw how this film has started a dialogue. What more could we hope for—
PAM: There has been an incredible outpouring of response from people in the FTD community. I will certainly never forget the note from one person diagnosed with FTD: he asked for a DVD so he could give it to his therapist who does not charge for the appointments, saying “I think if he saw it, it would help him help other families.” Many have said they hope the film will help bring focus and attention to finding a cure and treatment for FTD. As one viewer put it, “Knowledge is power.” Some who have lost a loved one to FTD said that it meant a lot that the film captured not only Laury’s decline – but also her beautiful sparkle and the twinkle in her eye that was there right through to the end. As Connie says, we’ve heard a lot about the importance of not feeling alone. One viewer expressed this so poetically: “It brings one solace to recognize their own suffering in the experience of others.”
AFTD: You’ve described the editing process as being an intensely personal one. As you navigated that, what was important to you about the tone the film sets for viewers? What types of decisions did you have to make in shaping the way people would see Laury’s story?
PAM: Throughout the shaping of the story we wrestled with striking a balance between light and dark. We needed to convey the depths of what Laury was going through, but if the tone was relentlessly grim, viewers would understandably turn away. I think we reached a turning point when we realized that Laury’s ability to laugh at the absurdity of her situation also gave the audience permission to laugh as well as cry. That was the essence of Laury, and a gift to viewers.
CONNIE: I think once the decision was made that this was not going to be a medical documentary about FTD but a personal journey, the freedom to tell a story rooted in friendship took over. You have all this footage of people who loved Laury and so much footage of Laury laughing and smiling and just being up for the party, that the energy in the editing room from my perspective was one of such deep love for this woman. I feel like we took our cue from Laury and she was on her A game!!! And she was not crying or in mourning for herself, so we followed her lead.
AFTD: The depth of support that both of you – and all of Laury’s friends – are able to provide is a striking positive in the film. What advice would you offer to family caregivers and friends of people living with FTD, as they seek to mobilize and provide support?
CONNIE: Do not go this alone! As a caretaker or a friend or family member, seek out your support. Gather your team who will travel this journey with you as it is unforgivably lonely. Go to as many resources as are available and utilize the information. This is a baffling disease that throws curveballs over and over.
Do not forget the essence of this person is still there, buried beneath the dementia. They are tucked away in little file cabinets. Keep searching for them. AND get them singing!!!!
PAM: Yes! What she said! And also, try to support the caregiver in any way possible, and encourage caregivers to care for themselves. Because what caregivers experience on this journey is beyond anyone’s imagination. For more on this, people might be interested in seeing our short web feature, “Caring for the Caregiver,” an interview with Columbia University Medical Center’s Jill Goldman, who has deep experience running FTD support groups.
AFTD: What has it been like for all of you to see the film and Laury’s experience out in the world?
PAM: Laury placed a huge trust in us by inviting our camera to witness her experience during that devastating year of her life. Seeing her story resonate with viewers is indescribable. I would give anything not to have made this film, and to have Laury around the corner raising her beautiful children and enjoying their first steps into adulthood. But I know how much it would mean to her that telling her story is helping others. She was generous that way. And I’m grateful to her family for their courage in supporting her desire to tell her last story.
CONNIE: For me, seeing this film have a life, is finally letting Laury go. How she would want her story to be significant to others…She thrived on being such a good friend. She can still do that. Her film is like a guide…like her holding the hand of someone else going through this. Her friends are all of our friends. We are all of those characters going through a most challenging situation. How do we cope? We do, what Laury did, smile and laugh and gut our way through and do it with our friends and family. An honor to have this film seen by so many. Proud Proud Proud!
AFTD: The movie’s initial availability has been extended, and it’s now running online through June 9. If support groups or (other professional education contexts) would like to arrange screenings, what’s the best way for them to reach out?
CONNIE: I will let Pam answer this!
PAM: We’re thrilled that America ReFramed has extended online streaming for two months! Plans for screenings are already underway in several locations, and we want to make the film widely available for screenings and training. Just contact us at: email@example.com or message us on our Facebook Page.
In a WonderRoot Artist Feature podcast, artist Tori Tinsley explores how her mother’s FTD diagnosis has shaped her artwork. Listen to the feature here.
AFTD will hold its 2015 Education Conference at the DoubleTree Hotel in Mission Valley, California on Friday, April 24. Attendees–to include individuals diagnosed, family members and health professionals– will engage experts in FTD research and clinical care, nonpharmacological interventions and hospice. The full press release is accessible here.