Jason Boschan of Charlotte, North Carolina ran his first marathon on April 16, 2000. At the time he thought it would be his first and last race, but he was mistaken. What started as a personal athletic challenge for Jason has grown into a powerful tool in the fight to cure dementia. In 2011, Jason established Run4Papa with a mission to bring global awareness to curing dementia. Through Run4Papa, Jason has raised over $200,000 in support of cutting-edge research at the Cognitive Neurology and Alzheimer’s Disease Center (CNADC) at Northwestern University Feinberg School of Medicine.
“Jason Boschan is the ideal philanthropist. He developed a personal interest in a disease that struck his beloved grandfather, he researched the disease and sought out investigators who specialize in this condition, and he literally went around the world to advance his cause,” said M. Marsel Mesulam, MD, director of the CNADC. “I can say that the money he personally raised for the CNADC has already had a major impact on research and patient care targeted to this rare form of dementia.”
Since starting Run4Papa, Jason has completed 32 races, including at least one marathon on each of the seven continents:
- 2012 Great Wall of China Marathon
- 2013 and 2014 Boston Marathon (Jason stopped at mile 25.8 after the 2013 bombing, returning in 2014 to finish)
- 2014 Big Five Marathon in South Africa
- 2014 Rio de Janeiro Marathon
- 2015 Australian Outback Marathon
- 2015 Chicago Marathon
- 2016 Antarctica Marathon
- 2016 Athens Marathon
The inspiration behind Run4Papa and Jason’s determination is his grandfather, a lifelong pediatrician, Dr. Louis “Papa” Heyman, who was diagnosed with primary progressive aphasia (PPA) in 2005 and passed away in 2014. PPA is a form of cognitive impairment that involves a progressive loss of language function. It begins very gradually and initially is experienced as difficulty thinking of common words while speaking or writing, but progressively worsens to the point where verbal communication by any means is very difficult. In addition to this decline in verbal skills, individuals with PPA also lose the ability to understand what others are saying or what they are reading. It is a particularly challenging dementia to study because no two cases are the same.
Jason came into contact with other PPA patients and caregivers when his grandfather sought treatment at the CNADC. Dr. Mesulam identified PPA as a unique neurological syndrome in 1982, and the CNADC is now a world referral center for it and other frontotemporal dementias.
“My Papa dedicated his life to helping others by examining sick children and easing the concerns of their parents. He was soft spoken and led by action,” said Jason “When he was diagnosed with dementia, it broke my heart to see his mind and body slowly deteriorate.”
“I created Run4Papa because of my desire to run races all over the United States to raise dementia awareness and funds in hope of making my Papa and family proud,” he continued. “My initial vision: a one year campaign, raising $10,000 for research.”
Building a Movement
Through Run4Papa and his experiences running around the world, Jason has developed his goal into a two-fold one. He will both continue to raise money for and awareness of dementia, while simultaneously challenging himself physically in a venue that matches the fight his grandfather battled.
“I hope to inspire people from around the world to help find a cure for dementia. I believe this will happen in the next 20 years, or even less,” said Jason. “Every day, I receive emails from people I have never met who ran a race for the first time for this cause. Every week, people send me pictures of themselves running races with the words ‘Run4Papa’ on their hands because they want to add their faces to the cause. I love that more than anything!”
Jason continued: “As for the future, I plan to continue running races and expand my career into being a motivational speaker and ambassador for dementia research.”
Jason has built a strong foundation of support for the CNADC. Through Run4Papa, he has inspired his family and friends, as well as CNADC patients and caregivers, to support pioneering work in neurological disorders. His resonant message of hope is impacting the future of dementia research and care at Northwestern.
Run4Papa supporter Nicola Comerford of Wellington, New Zealand, shared: “Jason is a masterclass in what can be achieved when you put your mind and body into doing something! His Papa would be proud and so are we from halfway around the globe.”
Another supporter, Wendy Moss from West Bloomfield, Michigan, shared: “I loved your story—every single second of it! It is great people like you who make a difference and make a change in our world. If anyone can bring awareness and a cure to this horrible disease, it will be you!”
Dementia from All Angles at Northwestern
At Northwestern, researchers at the CNADC are working tirelessly thanks to support from people like Jason and those who support his efforts.
The CNADC currently conducts the largest known longitudinal study on PPA. The Language in Primary Progressive Aphasia research program recruits participants from around the country who have a diagnosis of PPA. These individuals stay in Chicago for several days while they undergo neuropsychological testing, MRIs, EEGs, and a variety of other tasks that allow researchers to better understand the causes and manifestations of PPA. Some subjects are selected to return every two years for the same tests, which serves as a way to measure and quantify disease progression.
In addition to conducting breakthrough research into neurological diseases, the CNADC is committed to transferring the benefits of that research to patients, providing care for dementia sufferers and resources for those who love them. Likewise, CNADC faculty and staff educate the next generation of physicians and researchers who will carry their work into future for the benefit of patients and families.