April 2013 Volunteer of the Month

Deb Graham 

Paying it Forward

Former Speaker of the House Tip O’Neill had a saying: “It’s nice to be important, but it’s more important to be nice.” Deb Graham’s attitude towards helping families with ALS shows that is true. By being there for our ALS families, she has provided a constant example that allows her to pay her generosity forward in ways that are impossible to adequately measure. That is why she is our April 2013 Volunteer of the Month.

Deb’s mother, Sang Bok of Lancaster, PA, was diagnosed with the bulbar form of ALS in the fall of 2004. Like so many others touched by the disease, they did not know much about ALS. So Deb started by going online and looking up "slurred speech." Before the diagnosis, she didn’t read too much, thinking that her mom couldn’t possibly have ALS. They spent six months going from doctor to doctor before going to Johns Hopkins for an EMG where they received confirmation that it was Lou Gehrig’s Disease.

Deb and her mom then began to go to the ALS Association Certified Clinic at Hershey Medical Center. There they met Sue Walsh, RN, ACNS-BC and Zach Simmons, MD, who helepd them learn how to live with ALS. Deb became her mother’s advocate and caretaker. Thankfully for Deb, she lived less than two miles from her parents and she was able to provide a great deal of physical and emotional aid.

Deb’s mother declined quickly, but they were still able to form a team for the Hershey Walk to Defeat ALS® in June of 2005. Sang Bok passed away that summer, but Deb has continued to carry on her mom’s memory with her amazing walk team and has raised over $22,000 since her journey began.

“I want to help other people to not go through what we went through,” said Deb. “That’s my goal. We’re proud of each dollar we raise. Every bit helps.”

Just as watching her mother live with ALS made an impact on Deb, she is making an impact on everyone around her through her many volunteer efforts. Deb works from home, so doesn’t see her coworkers much, but when her company said that they do a Jeans Day once a month where people donate five dollars, she shared her story and was able to have them do it on the Friday before the Super Bowl, raising over $1,000 and hearing from people whose families had also been touched by ALS, creating a wider community of hope.

Deb’s example goes further than fundraising. After her mom passed, Deb asked Judy Lyter, MS, LPC at the Hershey Clinic how she could help and then attended a Lancaster resource group. There she met many people who were living with ALS and was then able to turn her story into one of comfort for others. It was important to Deb to be nice, but it was more important to those families to have that nice gesture extended at a time that Deb herself knew could be scary.

Following that meeting, Judy asked Deb if she would like to be a Visiting Volunteer. As it happened, Deb had bumped into Ed, a person with ALS ,at the local greenhouse and she became his visiting volunteer, helping with things in the house, and providing conversation and support for Ed and his wife Glenda. The three of them developed a real bond and now Glenda wants to be a Visiting Volunteer as well.

Deb also was one of the first to sign up to become a Community Ambassador, raising awareness and money for the Chapter. Ed and Glenda told her about the Oregon Dairy event in Lancaster County and she contacted us and set up an ALS information table there, which she continues to staff every year. In 2012, Deb ran the Community Ambassador table at LeSean McCoy’s ALS Celebrity Softball game in Lancaster as well. Wherever there is an opportunity to educate people about ALS in South Central, PA, Deb Graham steps up to the plate.

Our Chapter is fortunate because as we grow, so does Deb’s involvement. This year she joined the Hershey Walk to Defeat ALS® committee, and she’s found new ways to bring ALS to the attention of local media. More than anything though, she has provided an example to all, whether patients, caregivers, other volunteers, or people affected by ALS who just need a minute of comfort and compassion. As Deb might say, every bit counts.


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.