June 2017 Volunteer of the Month
Marcia Telthorster

 

When ALS impacted the life of Marcia Telthorster, she took nothing for granted. Her husband Greg, known affectionately by his students as Mr. T, was diagnosed with ALS in 2005. When Marcia learned about the diagnosis, she didn’t sit back and accept anything. She started by asking questions.

Marcia quickly learned that ALS was a constantly changing disease. She would have to constantly change her approach to the disease as well. The clinic staff helped her feel comfortable with asking questions and to be open about what was coming next for the family. That openness would help Marcia to become a fundraising leader and champion for the Chapter as well.

“Each clinic visit we would develop some new loss and we needed to understand it, reframe it, and figure out how to continue living a life worth living without that particular function,” said Marcia. “They always listened, understood, and, in most cases, had a solution.”

The best solution that the clinic had was to empower Marcia and Greg to solve problems themselves. As a result, Marcia felt more confident in searching for ways to raise money and awareness for the ALS cause.

The Telthorsters’ first event was the Walk to Defeat ALS at Oxford Valley Mall. They were shocked and thrilled when over 100 people joined their team that day, most wearing orange Legs4Greg shirts and fancy stockings or decorated pant legs as part of a fun theme. They were overwhelmed by the support, and it all came from simply asking friends and family if they could do something to help their team succeed.

Marcia continued to ask others and to encourage others to ask questions too. She attended a Chapter support group for newly diagnosed ALS patients and spouses. “Everyone was asked to make lists of all of the people we would be willing to help and what we would be willing to do for them,” said Marcia. “When we wrote down our names, the counselor asked if each of those names on our lists would be willing to do the same for us. It was eye-opening for Marcia and she realized that she should accept help from others and be an open resource for ALS families as well.”

From the start, Marcia realized that people wanted to help. Part of that was because people loved Mr. T, but a big part of it was also that people cared about her and her family. Neighbors and friends knew how challenging it was to be a family caregiver and how important this was to her. Now she was emboldened to ask people not just to help her family, which was important, but to do something bigger for the ALS cause. Sometimes people said they couldn’t, but Marcia was OK with that. More often than not, people would say yes in their own way.

Legs4Greg continued to do the Walk to Defeat ALS when it moved to Citizens Bank Park in Philadelphia. They also formed a team with the Ride to Defeat ALS and this year marks Marcia’s ten time riding to Wildwood for ALS research. She has finished the 25, 50, and even 75 mile ride routes and loves the fun and excitement with her team. The bike ride, like the walk, always brings a lot of positivity. It is not always easy to get people to ride a bike for 50 miles on a Saturday, but Marcia has a very unique way of getting people to help – she asks.

When ALS made it difficult for Greg to get to Philadelphia for the November walk, Marcia had a different ask of her friends. Could we do a Walk to Defeat ALS here, in Doylestown? It seemed impossible. They would just have to ask for money and send a check to the Chapter maybe. But again, she asked and people delivered. Over 100 people put together a fun Walk in Doylestown, donating not just money and time, but food and drinks and any bit of help necessary. Even after years of working to fight ALS, Marcia was still surprised and overwhelmed by the response.

After Greg passed away from ALS, Marcia wanted to find another way to remember him. So, again, she asked questions. Marcia learned about the Chapter’s Named Fund program and she started a fund in Greg’s name as a way to remember him, not just as someone who had ALS, but as someone who was loved and who inspired his students, his family, and his community to do more with their lives. That fund continues to this day to support Chapter programs.

With all of the questions that Marcia has asked of others, it’s important to ask one of her – Why should others get involved?

“The reason to ride or walk or just donate is because this disease can happen to anyone,” Marcia said. “My family had absolutely no history and no reason to believe this disease would befall Greg. We just want to make sure it doesn’t happen to our grandchildren or yours. And if it does, the Chapter can and will provide help and support that cannot be found just anywhere. Volunteering, raising money, riding, letter writing, and helping with the walks and rides are all great ways to help the cause and raise awareness.”

Learning that somebody you love has ALS can stop you in your tracks. Marcia learned to be comfortable with asking others to do something. For that, she hasn’t just volunteered her time and energy, but she’s encouraged hundreds of people to find their own ways to help. That is a legacy that everyone can celebrate.


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

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