What I've Learned From the Epilepsy Community
Imagine if you had a normally developing child who suddenly began having daily, uncontrollable seizures – a frightening situation parents often describe as robbing their child from them. You soon realize that this life-long condition is something so rare that you may go your whole life without standing face-to-face with another family who shares your experiences and truly “gets it.” This is reality for many of the epilepsy families I’ve had the great fortune of getting to know through my work at Lundbeck.
For the past seven years, I’ve learned so much from these families; it has not only shaped who I am as an individual, but it has also had a profound impact on how the Lundbeck team approaches all the patient communities we support. Our culture is deeply steeped in our passion for patients, and truly seeing the individuals and families behind their disease. It is these individuals who fuel and guide us every day in the work we do, keep us focused and persistent, and remind us that by listening to their needs we will always stay on course.
We are never more humbled than when the people in the communities we serve recognize this dedication. We recently learned that epilepsy patient groups in the U.S., as surveyed by the research and consulting organization PatientView, ranked Lundbeck first in overall corporate reputation among leading pharmaceutical companies. It is because we have listened to and partnered with the epilepsy community every step of the way that we stand here today with this honor.
For instance, in 2011 we heard from the Epilepsy Foundation the need for a program that could provide an outlet for people with epilepsy to express themselves and share their stories while raising awareness for epilepsy. From this insight, Studio E: The Epilepsy Art Therapy Program was born and through Lundbeck’s support, is now available in more than 65 cities across 37 states. Not only have we heard first-hand from participants how life-changing the program is, one research study showed that it also helped increase participants’ self-esteem.
We also hear time and time again from people in the epilepsy community that they are looking for ways to help others who are living with this condition. Seeking to help fill this need, we launched the Education Enrichment Fund with Citizens United for Research in Epilepsy (CURE). This program provides a one-time scholarship (up to $5,000) to those living with epilepsy, family members and caregivers to be used toward coursework to advance personal knowledge in research, health education, advocacy and awareness in relation to their experiences with epilepsy.
November is Epilepsy Awareness Month and an important time to reflect on the needs of the epilepsy community. I feel good knowing that the educational tools, programs and therapies we have developed over the last decade reflect Lundbeck’s commitment to helping to meet those needs. I look forward to continuing to stand shoulder-to-shoulder with the epilepsy community as part of our enduring commitment.