January 2014 Volunteers of the Month

Emma and Sophia Phelan

Don’t let their size fool you, ten year old Sophia Phelan and her eight year old sister Emma are making a huge difference in the fight against ALS. In just one year, they have participated in the ALS Express Bike Ride, visited with Congressman Jon Runyan in Washington, D.C., and held a fundraiser in their school to raise over $1,000 for The ALS Association. In that one year, they’ve kept one person in mind: their dad.

While Emma and Sophia are working for their dad, Tom Phelan, their efforts are helping the ALS community at large and people are taking notice.

As Sophia wrote in her letter to the Greater Philadelphia Chapter recently, about one year ago, her dad was throwing his daughter into leaf piles and the family was enjoying happy times together. Now, at the end of 2013, Tom is in a power wheelchair, having lost his ability to walk, use his arms, or speak. Yet, with all that ALS has taken in one calendar year, nothing will take away his smile when he sees all that his children are accomplishing for him and others. It’s the one muscle that ALS can’t stop.

Tom and his wife Karolina have reason to smile when they see what Emma and Sophia are doing. They saw first hand how ALS affects a person and a family. Their father is their inspiration for their volunteer work, but both Tom and Karolina are frequently inspired themselves by the intelligence, compassion, and dedication that their daughters show on a regular basis.

In early 2013, Tom met members of the New Jersey State Assembly to make the case for supporting ALS patient care. He saw the value of sharing your ALS story to influence law makers. A few months later, Tom went to Washington and brought his family with him. There Emma and Sophia stood out, even up against the tall former pro football player and current Congressman Jon Runyan. Representative Runyan listened to Tom, but saw  through Emma and Sophia how having a father live with ALS could significantly impact a family. Their voices hit the Congressman hard, and that’s saying a lot for a man who had spent years getting hit by three hundred pound linemen in the National Football League.

Following that May meeting, Emma and Sophia continued to make a difference. They raised money over the next few weeks for the ALS Express bike ride, engaging in a friendly competition with other local families involved in the ride. They helped their team raise thousands of dollars and the 2013 ALS Express was the most successful ride yet for The Chapter.

As the year went on, Tom’s ALS progressed quickly, but as his physical strength deteriorated, the strength of Sophia and Emma in the face of the disease only grew. They saw an opportunity to raise more money and awareness at their school in New Jersey and talked to their teachers and administrators about how to make their idea a reality. They spent weeks organizing their classmates and teachers for a day selling ALS shirts and socks on a dress down day. It was their first time doing something like this and they had no expectations, but their friends were touched by their story and wanted to help. In one day at school, the girls raised nearly $1,100 and inspired their school at the same time.

Sophia wrote a note to the Chapter after the event explaining not just how much they raised, but also how much she knew about ALS and how it affects her father. If you ask most ten year olds what Lou Gehrig’s Disease is, they probably don’t know and they probably don’t even know who Lou Gehrig is either. Sophia knows all too well and she holds nothing back. This young girl and her sister are very aware of the real effects of ALS, but they are also aware of how they can make a difference.

Nothing can hold back the Phelan girls, and that is what makes them our volunteers of the month. They will continue to inspire volunteers, lawmakers, and many more for years to come.


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.