For Anne Punzak Marcus, the co-founder of Exceptional Lives, accessibility is the answer.  In her quest to create a service for families raising children with disabilities, the former Fidelity Investments senior vice president experienced this breakthrough during her time as an Advanced Leadership Initiative Fellow in 2012 and Senior Fellow in 2013. Even before Exceptional Lives, an online clearinghouse of resources and support, took shape, Marcus, as the mother of a son with a form of cerebral palsy, knew she wanted to apply her myriad skills to helping other parents.

“There's a saying about how when you have a child with disabilities, it feels like you're in a foreign country,” she shared. Even as a Wharton grad and high-performing executive, Marcus was subjected to the confusion and condescension that accompanied the barrage of information levied at parents. “You're already feeling overwhelmed, and a lot of acronyms are thrown around. You don't know what they mean at first, and it makes you feel inadequate.”

Determined to help other parents, Marcus came to Cambridge after hearing about ALI from both friends and colleagues. “I started to realize that if I was to do something that had more of a direct impact on families that I needed to learn about transitioning from the for-profit to the not-for-profit world,” she said. Her goal was to create something that would provide needed information online, in a readily accessible and user-friendly manner.

 “I came with a plan, but I definitely changed that plan along the way,” she said. “I realized that though I ultimately did form a not-for-profit, that there are many different ways that you can accomplish change.”

ALI, she recalled, helped her focus on both what she wanted to achieve and how to go about it. “The core curriculum helped me to clarify what the problem was that I was trying to solve,” she said. That problem? “Social isolation, a fragmented and shifting resource landscape, and complicated access to government services create barriers for the families and professionals who support exceptional children.”

During her time in Cambridge, Marcus learned that how she framed her questions could be as important as finding the answers. For example, from speakers such as Nicco Mele, a former Kennedy school lecturer and Director of the Shorenstein Center, she learned “you don’t want to just scratch your own itch,” she said. In other words, “you don’t want to build something that only meets your needs, because what I need might be very different from what other parents need.

“It wasn't about necessarily giving everyone information,” she realized. “It was about giving them access so they could find the information they needed.”

Her ALI cohort also proved invaluable. “There was so much I have had access to as a member of ALI,” said Marcus. “Just being around other people trying to contribute was very important to me.”

Along with her 2012 and 2013 colleagues, many of whom have become trusted allies and friends, including two who have joined the Board of Exceptional Lives she bonded with Raymond Jetson, ALI 2010, who is also the parent of a child with a disability. A native of Louisiana, Jetson introduced her to the Baton Rouge Area  Foundation, which provided a grant to launch the Exceptional Lives Louisiana platform in 2017. When the Louisiana Board of Education saw Exceptional Lives work, they awarded  Exceptional Lives a three-year contract and have followed up with subsequent contracts.

Today, Exceptional Lives is a team of nine and their website has had more than 1.5 million unique pages views in the past five years.

Offering information, advocacy, and skill-building tools for parents, as well as resources in Louisiana and Massachusetts in both English and Spanish, Exceptional Lives seeks to support family resilience. Above all, Exceptional Lives aims to be clear – and not condescending. “We try to have the voice of a good friend or an older sister,” said Marcus. That also means regularly updating the website, to make sure the content is always accurate, and the technology is user friendly and accessible.

“What’s most important is to understand what your user needs,” she said. “Creating Exceptional Lives has been by far the hardest thing I've ever done, but it's also been one of the most fulfilling things I've ever done in my life.  I am so grateful for the impact my team and I have been able to have in improving the lives of families caring for a child with a disability.  I hope that others seeking to make a difference hear about ALI and recognize how transformative your experience will be – not just for you, but for the world.”

For more information, visit the website at ExceptionalLives.org.