Rare Disease Report

Louise Vetter Previews "Her Mother's Daughter" and Stresses Storytelling in Rare

OCTOBER 17, 2017
Louise Vetter
Louise Vetter, President and CEO of the Huntington’s Disease Society of America (HDSA), will be at the HDSA 50th Anniversary Kickoff Event in New York City on Wednesday, October 25. So, too, will Her Mother’s Daughter; an hour-long documentary highlighting the battle of a family plagued by Huntington’s disease.

In the videos below, Vetter stresses the importance of storytelling in rare diseases, and why film is such a powerful tool to convey messages that need to be heard. She also previews Her Mother’s Daughter and provides insight to the family featured in the film.

Vetter: In the realm of patient advocacy, I think that the stories of families affected by rare diseases are particularly poignant. Storytelling is an incredibly important tool in raising awareness of what families go through when they’re affected by these burdensome and devastating illnesses. At HDSA, we’ve used many tools over our 50 years – from letter writing, to working with the media for print stories, to diaries. In recent years, there’s been much more utilization of social media, like putting things on Facebook. Within the last two years, that’s included our Guthrie Sessions, which is a musical tribute that we have on our social media – Facebook and Twitter – so that families can see the legacy and the impact Woody Guthrie and introduce a new generation to Huntington’s disease that way. I do believe that in rare disease, we’re seeing more and more multimedia in terms of just helping with the storytelling. There are more documentaries, both short- and long-form that provide insight into what families go through, and I believe that it’s helping to create a cultural awareness of the complexity of disease management, and for some families, just the burdens that they’re facing.

Her Mother’s Daughter is certainly not the first documentary to raise awareness of Huntington’s disease, but it is the first pure insight into the family over a short period of time. Rather than looking at 10 days or 10 years of Huntington’s disease, it’s a snapshot. It’s 2 days of a family at home, then traveling to the HDSA National Convention, to show every day barriers, like going to a local department store, or how to organize meals and the dangers of living in your own home when you’re affected by a disease like this. I believe, that for Huntington’s disease, having that visual story component is really powerful.

Vetter: In the fight against Huntington’s Disease, we’re always looking to tell the families’ stories. It’s important to work with doctors and scientists and advocates, but really, what brings it to life is meeting the families that are fighting Huntington’s disease in their homes every day. This year, HDSA released Her Mother’s Daughter, which is our first-ever documentary produced by the organization with the help of a fantastic videographer and director named Ray Maxwell. It’s a relatively short film, at just under an hour. It chronicles a few days in the life of a family affected by juvenile Huntington’s disease and adult-onset HD. So, for folks not aware of Huntington’s disease, what it means as a neurological disease with complex movement, cognitive and behavioral symptoms, the film Her Mother’s Daughter really provides a window into the life of HD.

It chronicles Kathi O’Donnell who lost her husband to HD many years ago, and is now caring for her two children affected by adult-onset HD and granddaughter affected by juvenile HD. When the film was shot two years ago, Allison was 11 years old and is very obviously affected by juvenile HD, and Megan, her mother, was living in a long-term care facility in the later stages of Huntington’s disease. Shortly before the film was released early this year to the HD community, Megan lost her battle with Huntington’s disease. The film is really a tribute to her and the strength of Kathi as a caregiver. She is devoted to caring for her granddaughter and her son who are affected by HD. It’s an inspiring journey. We’re honored that the O’Donnell family opened their home for a few days to let us see what it means to live with HD so close up, and to be able to share that story with people. We, at the Huntington’s Disease Society of America, are eager to share the film to raise awareness of Huntington’s disease and really fight the stigma of the disease. The film will be released on YouTube on November 10 – for free. Anyone can view it and can download it. We hope that it really inspires a greater understanding of Huntington’s disease.
Check back on November 10 when Rare Disease Report will share the YouTube link to Her Mother’s Daughter.

For more on the HDSA, visit the organization’s website: HDSA.org.

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