Tuesday, January 1, 2019

2018 Volunteer of the Year

Thank you to the Malloy Family!

The ALS Association Greater Philadelphia Chapter was founded in 1977. Roughly three years later, Patrick Malloy was diagnosed with ALS. For most of the Chapter’s history, the Malloy family has been connected to the ALS cause. Their work has continued through good times and bad, which makes them more than worthy of being named as the 2018 Volunteers of the Year.

Patrick Malloy was diagnosed with ALS in October of 1980 at the age of 45.  He had a young wife and six young children. At the time of his diagnosis, there was almost no help for people with ALS and even less hope. In fact, most doctors at the time barely knew about ALS.

 “Daddy only had a squeaky stationary bicycle for therapy and a wheelchair. Nobody told us anything about the disease,” Kathleen recalled. “His neurologist told him to get his affairs in order and that we should try to make him comfortable. We were lost.”

When her dad was diagnosed, Kathleen, who was just 12 years old, was thrust into a role of caregiver along with her other siblings. In addition to assuming the role of caregiver, their mother Kate Malloy went to work full time to support the family financially. The oldest brother Patrick Malloy Jr. had just graduated from Moravian College in June of 1980 and their brother John was just starting college. The Malloy children were all busy growing, going to school, and planning their lives, focusing on futures that they never dreamed would include battling ALS. 

They also did not know that veterans like Patrick were twice as likely to be diagnosed with ALS. Years earlier, he had served honorably in the 82nd Airborne division of the US Army Paratrooper Division during the Korean War.  It would be decades later before the United States government acknowledged the extent of the connection between ALS and military service.

Patrick lived with ALS for nearly five years and passed away on May 12, 1985. His battle with the disease inspired the family to coalesce and find ways to support the ALS community. The members of the Malloy family were all finding their own unique ways to spread awareness of ALS and raise money for better care and research.

The ALS Association started the Walk to Defeat ALS in 2002 and the Malloy family was among the first teams to ever participate in a Chapter walk. Pat’s son John formed the Pat’s Posse team for the first walk at Franklin Mills Mall. It was a small team as everyone was still learning about what a walk would be like and how to fundraise. Soon after, Ann got involved and became the walk captain. Then their brother Charlie got involved with writing about his experience caring for his father with ALS and the effect that it had on him personally. Charlie also regularly participated in the Ride to Defeat ALS. 

Over the next decade and a half, Ann spearheaded the Pat’s Posse team. She used every ounce of her considerable energy to bring people together for the cause. Every year, she would find more ways to make the team successful, including holding additional fundraisers and volunteering to support families and those with ALS by making personal visits. Ann told everybody that finding a cure for ALS was what woke her up in the morning. She did not want any other little girl to see their dad go through what her dad went through with this disease. The Malloy family has raised well over $100,000 to fight ALS through their walk team over the years and they are determined to continue their work.

It’s enough that the Malloys have had to weather the heartbreak of losing a beloved father. But, tragically, ALS robbed them again of loved one when their oldest brother Pat Malloy, Jr. was diagnosed with the disease in 2015. 

Everyone in the family was shocked. As opposed to when their father had ALS, now everyone knew what to expect. He lived in New Jersey but moved back to his roots in the Philadelphia area and lived with his mot her who became his primary caregiver. Since the family was so connected to the Chapter, they knew who to talk with at The ALS Association and Ann made sure to ask questions of the Chapter’s nurses and social workers to connect her brother to the best care possible. Each sibling played a caregiving role, from Ann connecting with the local ALS Association Chapter to brother Tim coordinating health insurance to Kathleen navigating Patrick’s direct care. 

Patrick played defensive tackle for Moravian College’s football team and was President of his class. When his former classmates learned about Patrick’s battle with ALS, the alumni network rallied to his cause. Unfortunately, Patrick’s battle with ALS was shorter than his father’s and he passed away in January of 2017.  Years earlier, Patrick had guided his sister Kathleen into her own college career at Moravian.  In memory of Patrick, Kathleen and Ann worked with the college to keep his memory alive and educate others about ALS. In the spring of 2017, Ann and Kathleen were invited to talk about the realities of ALS during the college’s Brain Week. 

It was there that Kathleen made new connections with the college and met another person with ALS, Sarah Brendle. They quickly became friends, united through very different ALS stories. Sarah recruited Kathleen to become an advocate and they began visiting Harrisburg together to speak with state legislators.

Advocacy has given Kathleen another avenue in which to support the ALS community. Because of her efforts, the state of Pennsylvania has increased its funding for ALS care programs by 50%. Kathleen’s brother Charlie also participates in advocacy at the national level and visits Capitol Hill each year to make the case for funding ALS research while working with his local ALS Association Chapter in Virginia.

The pain of losing their brother Patrick was still raw when the unbelievable happened. Ann Malloy, the amazing, indefatigable leader of Pat’s Posse, was diagnosed with ALS in May of 2018. The disease was a rapidly progressive form of ALS and it took Ann’s life just two months later.

For years, Ann was the driving force behind Pat’s Posse. She had already registered their team for the Greater Philadelphia Walk to Defeat ALS before she was diagnosed with the disease herself. There were two things that Ann wanted to see in her life: a cure for ALS and an Eagles Super Bowl win. She got one of her wishes, but her family is determined to make her other wish finally come true.

This year, Pat’s Posse is walking without their captain. This year, their team is walking for Ann. Kathleen notes that it’s almost ironic that the woman who fought the hardest is the one who was taken down by this disease. Ann said that “there’s always hope,” and, admittedly, that can be hard to see sometimes, but the Malloy family all knows that they will see a sea of family, friends, and supporters when they Walk to Defeat ALS again at Citizens Bank Park on Saturday, November 3. 

The Malloy family has been volunteering, raising money, and bringing hope to the fight against ALS for over 35 years. It has not gotten easier, but their determination is stronger today than ever.

No comments:

Post a Comment