Photos and text used with permission of
Jon Sadler was four years old when he experienced his first seizure. He has learned a great deal about living with epilepsy - that changes in one's environment, as well as stress, and manners of selfcare, can trigger seizures. Over this same period, the research community, too, has made significant advances in understanding epilepsy and in developing new medications and surgical procedures. Just as important, society has also made great strides in becoming informed and educated about this condition.
Jon's involvement with the advocacy community began with the H.O.P.E. mentoring program offered through the National Epilepsy Foundation. H.O.P.E. stands for "Helping Other People with Epilepsy," and Jon's own experiences served to guide him as he became a mentor to others - children and adults - diagnosed with epilepsy. Meeting with individuals suffering from epilepsy, speaking with their families, giving presentations at schools and colleges: These activities have not only benefitted persons with epilepsy and their loved ones but have had the serendipitous effect of showing Jon how he can continue to help others.
Through his advocacy involvement, it was perhaps inevitable that Jon would find his way to the Peer Reviewed Medical Research Programs (PRMRP) and be invited to train as a consumer peer reviewer for the program. He notes that "the engineer part of me was impressed with the organization and resources the agency brings together to analyze the research being proposed," and remarks that he knew immediately the wisdom of bringing consumers to the table to be part of the review team. As he observes, "The advocates are the people who can relate beyond the science to the importance of the treatments/research being proposed." He reports that the PRMRP peer review experience has enabled him to gain insight into his own life's journey and his ability to provide hope to others.
Jon reminds us that epilepsy is the fourth most common neurological problem, just behind migraine, stroke, and Alzheimer's disease.* When he talks to people with epilepsy, he stresses the importance of fully communicating with their health care team: Letting doctors know the impact that medication is having on them, whether it is affecting their personality or their emotions, their work experience or social life. He points out that the consumer brings the perspective of a person living with epilepsy to the review process, reminding scientists and clinicians that it is not just the problem that should be treated but, rather, the whole person.
A civil engineer by trade, Jon emphasizes that the key to working with patients and their families is helping them understand that they are not alone and showing them how others with epilepsy have been able to live, even thrive, in life. In a life filled with many achievements, Jon considers his greatest success to be his family-he's enjoyed a long marriage and has two sons doing very well in their chosen careers. He is now on his way to obtaining a master's degree in pastoral counseling, which will enable him to reach out and be a support to others on a broader scale. "I have seen people inspired when they learn they are not alone. As with any condition," he reflects, "one's experience can provide hope to others."
*National Epilepsy Foundation. 2014. http://www.epilepsy.com/learn/epilepsy-statistics.
Last updated Thursday, May 26, 2022