An Emotional Look at a Rare Disease

 At Picture Motion, I had the great privilege of managing the impact campaign for Lucy Walker’s short documentary film, The Lion’s Mouth Opens. The film provides an intimate look at Huntington’ disease through the personal journey of the its brave subject: filmmaker and actress Marianna Palka. We worked with an incredible array of medical professionals and patient advocacy organizations, using the film as a powerful tool to help educate new communities about the disease.

One of our key campaign partners, Global Genes, is honoring Lucy Walker and Marianna Palka with a RARE Champions of Hope Award this September 24th at their annual RARE Patient Advocacy Summit. This film campaign brought together a unique mosaic of voices, creating a far-reaching call for increased support to find a cure for this cruel disease. In honor of the film team’s upcoming award, I’d like to highlight some of the inspiring individuals and organizations that were mobilized through the HBO broadcast premiere of The Lion’s Mouth Opens, and celebrate the ongoing work of Marianna Palka.

 In partnership with The Huffington Post’s Healthy Living section, we released a corresponding infographic about Huntington’s disease and published an HD Awareness Op-ed Collection. The 11 pieces in the op-ed collection provide a robust look at the wide range of efforts made to better support the HD community, including op-eds from individuals with the disease and their family members, researchers seeking to better treat and prevent HD, genetic counselors working with HD patients, and advocates fighting for crucial funding to cure the disease once and for all.

Here are a few educational pieces from a variety of HD experts from The Lion’s Mouth Opens HD Awareness Op-ed Collection:

Happy Graduation — Do You Want to Know Your Genetic Future?

Louise Vetter, the CEO of the Huntington’s Disease Society of America (HDSA), contributed an op-ed about the challenges faced by at-risk individuals when they turn 18 years old. In this moving piece, Louise describes HDSA’s crucial work and the unique window into the decision to get tested provided by The Lion’s Mouth Opens. HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease.

Predictive Genetic Testing for Huntington’s Disease: A Journey With a Genetic Counselor as Your Guide

Dr. Alicia Semaka, a genetic counselor with the National Society of Genetic Counselors, outlines the role genetic counselors play, what predictive testing entails, the decision of whether or not to get tested, and result reactions. The National Society of Genetic Counselors works with genetic counselors, providing a network for professional communication and discussions of all issues relevant to human genetics and the genetic counseling profession.

Early-Stage Brain Research Key to Unlocking Huntington’s Disease

While progress has been made in the rapidly advancing field of neuroscience, there is still more work to be done to find a cure for Huntington’s disease, says Terre Constantine, the Executive Director and CEO of the Brain Research Foundation. Highlighting the importance of HD awareness tools like The Lion’s Mouth Opens, she shares both her personal and professional experiences with neurological disorders. The Brain Research Foundation is a nonprofit private organization that promotes and supports scientific research concerning the brain.

Inside Huntington’s

The New York Times bestselling author of Still Alice and Inside the O’Briens, Lisa Genova, describes her exposure to Huntington’s disease research early in her career while working as a lab technician in a neurobiology lab at Massachusetts General Hospital East. She details the research behind her latest book, Inside the O’Briens, connecting her own characters’ experiences to The Lion’s Mouth Opens film subject Marianna Palka.

The Note of Hope: Woody Guthrie Center Partners for Huntington’s Awareness

Deanna McCloud, the Executive Director of The Woody Guthrie Center, writes about the Center’s interest in supporting HD awareness to celebrate Guthrie, as well as helping to address the need to cure the disease that took his life. At the Woody Guthrie Center in Tulsa, guests are often interested to learn more about Guthrie’s struggle with Huntington’s disease.

Through The Lion’s Mouth Opens, we have seen new awareness raised and created an opportunity for individuals who are not a part of the HD community to experience it firsthand through Marianna’s story. But there is more work to be done to find a cure for Huntington’s disease and a need for a greater commitment of funding to get us there. It’s up to all of us to help spread HD awareness to usher in this crucial support.

Support the incredible HD community of patients, families, researchers, counselors, and advocates by watching The Lion’s Mouth Opens with your friends and family. The film’s corresponding infographic is available online here and you can help support Marianna Palka’s HD awareness work directly here.


Alexandra PearsonBy Alexandra Pearson, Campaign Engagement Manager@AlexBPearson

Alexandra manages Picture Motion’s screening tours and campaign strategy development for select campaigns. She received her Masters of Arts in Media, Culture, and Communication from the Steinhardt School at New York University, where she focused on political persuasion and media systems. She also holds a Bachelors of Science in Political Communication from Emerson College in Boston. Alexandra has a background in political campaigns, media advocacy, and journalism, and is deeply passionate about social justice and environmental issues.