October 2015 Volunteer of the Month
From the Walk to Defeat ALS®, to ALS Express, Advocacy Days, Hot Chocolate, research meetings and more, if you attend a Greater Philadelphia Chapter event, it is very likely that you’ll see two words – Delaney Strong. While that strength is today often attributed to the love and support surrounding Karen Delaney Shideleff through her personal battle with ALS, there is someone else who features very prominently, though he would never take any credit for anything. That is Karen’s dad, and our October Volunteer of the Month, Larry Delaney.
Karen and her sisters would never call themselves the quiet ones in a room. That is why they have been so effective in every endeavor, mostly for the ALS community, but also for other causes about which they care passionately. If you put a microphone in front of Karen, Kathy, Chrissie or Susan, they will not shy away from speaking their mind, especially if they can use their voices to help others. Behind this foursome is the quieter, humble father who has backed every challenge and stood strong for his daughters and for everyone fighting ALS.
For Larry, and the Delaney family, that fight did not begin with Karen, it began with Larry’s wife Lorraine. In 1989, Lorraine Delaney was diagnosed with ALS with no idea that there was a genetic connection in her family. Her father had died when she was just 9 years old with what she thought was Multiple Sclerosis. Through the testing and screenings from 1989 on, Lorraine realized that not only did her father have ALS, but others in her family did as well. That family history continues to be a driving force for the Delaney Strong advocacy efforts each year and why they all are so active in research as well.
The ALS Association was much different in the late 1980’s when Larry Delaney’s life was first touched by ALS. The Howard I. Abrams In-Home Care Program did not yet exist. Neither did the Scott Mackler, MD, PhD. Assistive Technology Program. The Walk to Defeat ALS® was still years away from starting. Prominent figures in today’s Greater Philadelphia Chapter like Executive Director Jim Pinciotti were not yet on staff. Yet Larry was active then and never stopped working to end ALS.
At first, Larry’s connection to the Chapter was through support group meetings. Lorraine wasn’t comfortable with attending groups at first, but Larry found comfort and help at these meetings, which quickly made the Chapter an integral part of his life. After Lorraine passed away from ALS in 1991, Larry continued to attend groups. Ellyn Phillips invited him to a board retreat in March of 1992. He joined the board of the Chapter then and served until 2014 until he was term limited by the Chapter by laws.
During those 22 years, Larry played important roles with the Chapter as a board member, team leader and more. Today the Greater Philadelphia Chapter employs a Controller to oversee budget matters, but for years, Larry served as the Chapter’s treasurer. He participated in numerous late-night meetings with office manager Jeanne Johnson to review the budget, painstakingly laboring over the numbers. When he looked at the Chapter’s budget, he did not just see a spreadsheet of numbers, he saw lives and acted upon what would make the biggest impact on those affected by ALS. His oversight of the Chapter’s finances ensured that each year the real bottom line would not just be a dollar amount, but would always remain the fundamental mission of the Chapter – to provide help and hope to those affected by ALS.
In addition to his financial responsibilities with the Chapter, Larry quickly became an advocate for ALS research and patient care. He attended some of the first national ALS Advocacy Days in Washington, DC. Back then, the day on Capitol Hill was in its early stages, yet the same formula for success applied, sharing personal stories to advance the cause of ALS research. Larry lovingly retold the story of Lorraine’s battle and today, after those initial seeds of advocacy were planted, Congress has appropriated over $650 million for ALS research projects. In his typical humble, quiet fashion, Larry would never boast about being responsible for even one penny of that, and gives all the credit to the people living with ALS. However, it is obvious that Larry’s early advocacy continues to make a difference 20 years later.
Throughout the next two decades, Larry would take his board responsibilities seriously, helping with fundraising campaigns, the Curt Schilling golf committee, and general ALS awareness. What makes him stand out though is how, even with all that he did on the board, he found ways to go above and beyond those many tasks.
When the Walk to Defeat ALS® began in the early 2000’s, Larry Delaney was there with no hesitation. He joined the Chapter Board team at the first Wayne Walk to Defeat ALS® and then created Lorraine’s Legacy in tribute to his wife in 2003. The Delaney family was heavily involved in the team, both for the walk and for the ALS Express bike ride. Larry and his family continued to get involved at events like the Phillies Phestival, Hot Chocolate, and the Annual Luncheon. Almost always, if you asked Larry “Will you be there to help fight ALS?” His answer was a resounding yes before you even finished the question.
In 2011, Lorraine’s Legacy changed to the now famous Delaney Strong. Larry received the news that he knew far too well was a possibility and that he never wanted to hear. His daughter Karen was diagnosed with ALS. The familial line of the dreaded disease did not stop with his wife. Now he would be fighting for another loved one, but it was a fight that he was very prepared to take on with all of his strength.
The Delaney Strong team grew bigger than ever before at multiple Walk to Defeat ALS® and ALS Express events each year. Larry was always either a team leader, walking with the team, or, as he put it, available to babysit so that the rest of the family could participate. He thinks nothing of the last part, but his role as a father and grandfather helped the family celebrate and fight together.
Larry continued his advocacy in new ways. Now he joins Karen in Harrisburg, PA, where his testimony has helped ensure a yearly line item in the budget for ALS patient care. He’s joined Karen for appearances on Steve Highsmith’s television show in Philadelphia to raise awareness of ALS services and research. Larry has spoken on video to tell his story to further increase the profile of the Chapter.
All in all, Larry has done nearly everything there is to do in order to advance the cause of people with ALS, and he’s made it look easy. But it’s never been easy. Larry knows far too well the realities of ALS. He’s watched his wife battle the disease, struggling at that time to decide when and how to tell his teenage daughters the difficult news about their mother. He has been touched by the stories of literally hundreds of people with ALS since Lorraine passed away. With the first hand knowledge of the disease, he has shown a quiet strength at every moment to support his daughter with her personal battle, as well as helped his other three daughters in every way, and he still finds a way to advocate for everybody else living with ALS today.
Larry doesn’t have to do all that he does to be an amazing person, father, and friend to the Chapter. You could cut his involvement in half twenty times and he’d still be vital to the entire ALS community. While Larry would undoubtedly hesitate to put himself first, instead taking just a small bit of pride in the generosity of compassion of the daughters he raised, everyone at the Greater Philadelphia Chapter is pleased and honored to, just this once, let Larry Delaney take center stage and get the credit he deserves.
Thanks Larry for helping the Greater Philadelphia Chapter understand what it means to be Delaney Strong.