Harnessing the Power of Storytelling

Daniel Klein earned his journalism degree from Ohio University in 2011, and he’s been putting his knowledge to use for the TSC Alliance ever since. Initially as a volunteer and social media intern, and later as part of the development and donor relations teams, Daniel was able to help the organization communicate, develop relationships and secure funding. But a few years ago, Daniel noticed an opportunity for the organization to fill a gap in communications online and helped create a role for himself as the director of digital platforms. In that role, Daniel has used his expertise to create innovative platforms to tell compelling stories, raise awareness and generate support for the TSC Alliance.

One of Daniel’s most rewarding accomplishments during his tenure at TSC Alliance is the launch and ongoing production of TSC Now, a podcast featuring interviews with families, clinicians, researchers, TSC Alliance staff, and others on topics like TSC research, epilepsy surgery options, educational advocacy, and more. While the creation of the podcast has been a labor of love, Daniel believes that the podcast makes a meaningful impact for everyone involved.

“It’s really cool to be able to have a one-on-one conversation with a researcher and ask the questions we’ve received from families, as well as those I’m personally curious about,” says Daniel. “I also enjoy asking about how their work is ultimately helping families. It’s easy for researchers to be so focused on their work that they lose sight of the people for whom their work could make a difference. I love helping them recognize the value of their research and helping them communicate about how their work fits into the bigger picture of improving the lives of people impacted by TSC.”

The podcast isn’t the only platform Daniel has created to help the TSC Alliance share stories and communicate important information; he’s also launched monthly newsletters for families and researchers/clinicians, been instrumental in creating webinars and a video series, and, of course, helped TSC Alliance expand and enhance their social media presence, which now includes Facebook, YouTube, Twitter, Instagram, LinkedIn and Inspire.

From early in his journey at the TSC Alliance, Daniel recognized that the President and CEO, Kari Luther Rosbeck, and her team had empowered the staff and created a community that included everyone from families, researchers, staff, and volunteers working together in such a way that everyone felt connected to the work that they were doing. The families are the true inspiration and purpose, and everything the organization does is designed to help improve the lives of those affected. There is no separation between the organization and its community – everyone is passionate about the mission and understands the importance of every individual’s role and contribution.

“It’s hard not to love that type of work. We’ve made significant progress and I can see that what we’re doing matters and families’ lives are improved by the work that we’re doing,” says Daniel.

Founded in 1974, the TSC Alliance has a long history of working toward improving the lives of people impacted by TSC, as well as the rare disease community overall. The organization partners and collaborates with other organizations to create resources for the community, like the Seizure Action Plan Coalition developed in collaboration with the Lennox-Gastaut Syndrome Foundation and Dravet Syndrome Foundation. They’re also part of the Infantile Spasms Action Network, the Rare Epilepsy Network and others.

The staff at the TSC Alliance believe that a rising tide lifts all ships – sharing knowledge and lessons learned through its long history helps all rare disease organizations reach the goal of improving the lives of people living with rare diseases. As a result, Daniel has had the opportunity to work with representatives from a wide variety of other non-profit, patient-focused organizations, providing guidance and support from lessons he’s learned in launching and hosting a podcast, expanding social media, creating digital assets, and more.

TSC is a rare genetic disorder that causes tumors to form in many different organs – primarily in the brain, eyes, heart, kidneys, skin and lungs. It is estimated that as many as 1 million people worldwide have the disorder – males and females are affected in equal numbers and the disorder occurs in all races and ethnic groups. While the condition is caused by an alteration in one of two different genes, the TSC1 gene or the TSC2 gene, it is not typically inherited, but caused by an alteration occurring at the time of the formation of the egg or sperm for that child only. The severity of the symptoms and effects of TSC can vary widely between individuals – even between identical twins. Because the effects of the condition impact multiple systems throughout the body, a coordinated effort among a team of specialists is typically required to address the symptoms of the condition. You can learn more about the condition at www.tscalliance.org.