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Mom on a mission against neurodegenerative disorders


December 28, 2012

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Ellen Schwartz, an active Toronto philanthropist and teacher inspired by her disabled son’s battles, continues her mission to educate others and fund research for neurodegenerative disorders. 

Ellen Schwartz says she was always a philanthropist.

“Even as a young girl, I loved to please,” she said. “I take tremendous strength from witnessing the joy that I can bring to others.”

The teacher, author, speaker and co-director of Jacob’s Ladder, the Canadian Foundation for Control of Neurodegenerative Disease, says the birth of her first child, Jacob, only fueled her desire and dedication to make a difference in the lives of others as she was faced with one of the greatest hardships in her life.

Within months of Jacob’s birth, Ellen and her husband Jeff began noticing he was unresponsive and not reaching developmental milestones. Their greatest fear was confirmed when doctors diagnosed Jacob with Canavan’s Disease, an inherited neurodegenerative disease causing progressive mental and physical disability.

During the first year of their child’s life they were told the disease is progressive, fatal, has no cure and that their child would likely not live past 10 years old. Devastated, the family agreed they could make the greatest difference by sharing their story with others and creating Jacob’s Ladder, now a million-dollar foundation 14 years into its mission of spreading awareness and funding research.

Through Jacob’s Ladder initiatives and Project Give Back, a program Ellen helped introduce in elementary schools to teach students the value of making a difference, Ellen’s mission is to teach children the power of giving, as Jacob has done for his siblings.

“He has gifted them with patience, understanding, compassion, empathy and acceptance of difference,” she said.

She achieves this annually at Jake’s Gigantic Give, an event held by Jacob’s Ladder and corporate supporters, where children are invited to choose a gift to give to an underprivileged child, learning that others are not as fortunate as they are. Ellen shares that this year’s give, which took place on November 24th and 25th, was even more successful than she imagined.

“It was truly a giving experience from many angels and a win-win for everyone,” she said. “Everyone gave in a huge way and they all felt proud.”

In addition to the annual give event, other fundraising has enabled Jacob’s Ladder to build Jacob’s Therapeutic Pool at the Schwartz/Reisman Centre in Vaughan.

“I would put swimming with Jacob in a category of magical experiences,” said Ellen, who considers her children the greatest accomplishment in her life, even above all her philanthropic efforts. “Nothing gives me more pride than Jacob, Beverly and Ben.”

Instead of letting devastation win and forfeiting to the news that her child had a neurodegenerative disease, Ellen followed her heart, utilized her skills as an educator, and fought not only for her son but for the many other suffering families, with her heart and integrity constantly moved by Jacob’s courage.

“Each and every morning he struggles to breath. He has a fight in him that is so powerful to witness,” Ellen said. “If he can smile, what’s my excuse?

Jacob is now 15 years old.

Action Items

  1. Visit to follow Jacob’s story and learn more about neurodegenerative disorders and available screening.
  2. Check out to learn about schools involved and how it is impacting students.
  3. Take Ellen’s advice and learn that “the hardest struggles produce the greatest rewards.”

About the Author(s)

Kim Moreau

Kim Moreau is a recent Durham College Journalism - Print graduate interested in utilizing her communication skills to pursue a career within the education industry. She is an advocate for lifelong learning and a passionate writer.

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