Sara Clift Jones never had the kind of schedule that accommodated a diagnosis such as amyotrophic lateral sclerosis. A nurse, a mother, and a mother in perpetual pursuit of knowledge, her hands were more than full at the moment Lou Gehrig’s disease began to curtail her ability to use them.
“When she got her ALS diagnosis, she was undaunted as usual,” said her husband, Hugh R. Jones Jr., a past president of the Boston Bar Association. “She resolved to make the most of the time that was given her and saw this as a new opportunity to help others. She described it to friends as a challenge, not a tragedy.”
Rather than wait for ALS to subtract from her physical abilities, she added duties, such as offering insights to medical students and launching a fund to support research into finding biomarkers for the disease.
When Mrs. Jones accompanied her physician to speak to Harvard Medical School students, “she had them mesmerized, not just by talking about the disease, but by explaining how they could become better doctors and approach patients with serious illnesses, and give those patients hope,” said Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital.
Mrs. Jones, who was a nurse at Boston Children’s Hospital for more than 20 years and who cofounded an after-school program for Roxbury children, died May 12 in her Weston home. She was 72, and was diagnosed with ALS in 2009.
Cudkowicz also brought Mrs. Jones to meet neurology residents on grand rounds and recalled that “there wasn’t a sound in the audience as she spoke about what it was like to be a patient with a life-threatening illness.”
Not unaccustomed to holding her own in a crowd, Mrs. Jones raised four children and, beginning in 1988, worked in a variety of roles at Boston Children’s Hospital, where colleagues “describe her as awesome. They loved her,” said Sandra Fenwick, the hospital’s chief executive.
“She was an amazing contributor to this institution, both to the families and, obviously, to the children she took care of,” Fenwick said. “She took her amazing personal abilities, her drive, and her experiences as a mother, and poured them into her profession. I think she was just an extraordinary person.”
While working at the hospital, Mrs. Jones noticed that many children from families with limited financial resources had nowhere to go at the end of the school day. Along with her friend Joan Fortune, and with assistance from others, Mrs. Jones cofounded On TRAC, an after-school tutoring and mentoring program that has since become part of the BELL program, or building educated leaders for life.
“She had created something absolutely powerful,” Earl Martin Phalen, BELL’s cofounder and former chief executive, said of the program, which was designed to help children who were struggling to achieve while attending neighborhood schools that also were struggling.
“The other piece she tried to bring was hope,” Phalen said. “She helped children realize their innate, their God-given potential.”
Sara Jane Clift was born in Melrose, the oldest of three children, and graduated from Andover High School in 1958. She was the first in her extended family to attend a university, and her four years at Wellesley College were life-changing.
“She would say that she would walk across the campus at any season and any time of the day and just wonder at her good fortune at being there,” her husband said. “It empowered her.”
That confidence made an impression on him when they began dating in the fall of 1962, a few months after she graduated from Wellesley with a bachelor’s degree in history.
“She was beautiful, smart, and fun,” he recalled with a chuckle. “As you can tell, I’m still recovering, and I hope never to do so.”
They married in August 1963 and celebrated the 50th anniversary of their engagement less than a month ago.
With her husband working as an attorney in Boston, where he is now a retired partner from WilmerHale, Mrs. Jones raised their children in Weston. When the youngest started first grade, she returned to school, graduating from Lasell College with a nursing degree.
Doing so allowed her to augment serving on the board of Newton-Wellesley Hospital with volunteering on the Bridge Over Troubled Waters medical van, which offers free services and advice to homeless youths and young adults on the streets of Boston and Cambridge.
“She wasn’t at all interested in having it all,” her husband said, “but she was really interested in doing it all.”
Even though she shouldered so many responsibilities, Mrs. Jones “was the most committed and generous mom,” said her oldest child, Tripp of Wayland. “She had this magical way of leaving us always, right until the end, convinced that she had whatever time was needed and was completely committed to doing everything she could to be that great mom.”
Mrs. Jones also “was a constant inspiration for figuring out ways to make a difference,” said Tripp, who cofounded the public policy think tank MassINC. “It was extremely important to my mom that we understand our obligations to make a difference in our communities.”
For Mrs. Jones, life “was not about her. It was about her causes,” her husband said. “Fortunately, her four children, her 12 grandchildren, and I were at the forefront of her causes.”
In addition to her husband and son, Mrs. Jones leaves a daughter, Allison Elvekrog of Weston; two other sons, Clift of Cambridge and Dan of Weston; a sister, Janet Rose of Wellesley; a brother, John Clift of Manchester Village, Vt.; and 12 grandchildren.
A memorial service will be held at 10:30 a.m. Friday in First Parish Church in Weston.
Through her years as a volunteer, as a nurse, and creating a program for at-risk children, Mrs. Jones “always had empathy,” her husband said. “She could look around and instead of noticing the people in the room who were glittering, she noticed the people who needed help.”
With ALS, she turned part of her attention to those who would be diagnosed with the disease after she was gone, volunteering for numerous studies and researching the illness with characteristic rigor.
“She was a doer,” recalled Cudkowicz, her physician.
Mrs. Jones became so knowledgeable that upon finishing her remarks to the Harvard Medical School students, a physician who had introduced her “smiled and said, ‘As you can tell, this is not your average ALS patient,’ ” her husband said. “But in my view, she was not your average anything.”
Bryan Marquard can be reached at bmarquard@ globe.com.