When Raymond Wesley Rose III was diagnosed in 2005, at age 33, with amyotrophic lateral sclerosis (ALS), he was determined not to let the disease define his life.

Raymond Wesley Rose III
Courtesy of the family
Raymond Wesley Rose III

Instead, said his wife, Kelly, he became a powerful public spokesman, helping to raise money for ALS care programs and research that may someday benefit patients and their families.

The medical advances, however, did not arrive soon enough to save Dr. Rose, 45, of Abington, who died Wednesday, Jan. 3, in Abington Hospital of complications from the  neurodegenerative disorder.  He left a lesson in tenacity and courage, friends and family said.

"He taught us all about living with purpose and about making a difference in the world around us," his wife said.

An assistant professor of biology at Arcadia University in Glenside with a firm grounding in science, Dr. Rose, known as "Wes," was well-suited for the fight against ALS.

He graduated from Abington High School in 1990, and Franklin and Marshall College in 1994 with a bachelor's degree in biology. He earned a master of science in biomedical chemistry from Thomas Jefferson University in 1998, and a doctorate in biology from the University of Pennsylvania in 2003. He did post-doctoral training until 2006.

Ellyn Phillips, president of the ALS Association, Greater Philadelphia Chapter, met Dr. Rose in May 2005, shortly after his diagnosis. He was speaking about ALS to summer students at Villanova University.

"His remarks were clear, interesting, geared to the level of the participants, and at times humorous," Phillips said. "When we made our way out of the classroom, Wes told me to 'put him to work,' speaking about ALS to anyone who would listen.  I took Wes at his word and began 'taking him on the road,' to speak to the Phillies, corporations, donors, and at our events."

A video of Dr. Rose can be viewed at https://youtu.be/fx3itN8-1I0.

Equally important, Phillips said, was his service on the organization's board: "Wes could take complicated scientific information and translate it so that a lay person could understand its meaning. This was vital when the chapter was deciding how to allocate its research dollars."

John Weber, the Phillies' senior vice president of ticket operations and projects and an ALS association board member, said Dr. Rose spoke repeatedly to the club's players, managers, coaches, and other employees. The Phillies and the local ALS group have raised $17 million over the course of a 34-year relationship.

"He would always thank us for helping him and other ALS patients," Weber said. "In reality,  Wes was helping all of us at the Phillies understand what compassion and caring really means. Whenever he talked, you could hear a pin drop — he always had everyone's attention."

Dr. Rose took time to meet with elected officials such as then-State Rep. Josh Shapiro. now Pennsylvania attorney general; State House Majority Whip Bryan Cutler; and U.S. Rep. Brendan Boyle (D., Pa.)

Boyle said he was heartbroken to learn of Dr. Rose's death. "He turned his personal tragedy into profound advocacy. I valued my time meeting him and learning from him. ALS is a cruel disease that we must defeat," the congressman said.

While fighting ALS, Dr. Rose maintained a busy teaching schedule at Arcadia from 2006 until just before his death. He did research on how the immune system eliminates viral infections of the mammalian central nervous system. He received the 2011 Lindback Award for Distinguished Teaching, a student-nominated award.

John Hoffman, provost and vice president of academic affairs, said Dr. Rose was much loved by students and admired throughout the university for being a strong voice in the fight against ALS. "His undaunted spirit, positive energy, and sheer courage will continue to serve as an inspiration to us all," Hoffman said.

In addition to his advocacy work, Dr. Rose was a former deacon and an active member of Carmel Presbyterian Church in Glenside.

Dr. Rose married Kelly Herbert Rose, a family physician, in 1998. They have sons Nathan, 16, and Aidan, 13.

"He was a loyal, devoted, and tenderhearted husband," she said. "He was a very proud father of his boys and was always the passionate fan on the sidelines of his sons' sporting events."

His wife said that Dr. Rose loved all kinds of music, played bass guitar in multiple cover bands, and was proud that his boys consider themselves "parrotheads"– fans of Jimmy Buffett.

Besides his wife and children, Dr. Rose is survived by his parents, Raymond and Nancy, and a brother and sister.

A visitation will be from 4 to 8 p.m. Friday, Jan. 26, at Carmel Presbyterian Church, 100 Edge Hill Rd., Glenside. A service and celebration of life will be at 11 a.m. Saturday, Jan. 27, at the Keswick Theater, 291 N. Keswick Ave., Glenside. Burial is private.

Memorial donations may be made to the ALS Association, Wes Rose Fund, 321 Norristown Rd, Suite 260, Ambler, Pa. 19002 or via https://alsphiladelphia.org/donate-online