By Jim Pinciotti
Working with The ALS Association and the families we serve for over 20 years has been one of the greatest joys and blessings in my life. I was honored to be invited to join the Board of Directors in 1997 after sporadic volunteer engagements beginning in 1993. The chance to lead the Chapter operation as the Executive Director came as an unexpected opportunity in 2000. In the intervening years, I have met and gotten to know some of the most incredible, motivating people. Patients, caregivers, family members, staff members, board members, donors, sponsors, partners, vendors, and the list goes on. The inspiration and energy I have received from these relationships cannot be described other than to say they have changed my life.
Each year, we provide service to over 1,000 people living with ALS in our area. We don’t see them as numbers or clients. To me, and to everyone at the Chapter, they are people — people like Wes and Rhoda, Karen and Kevin, Shelbie and Kathryn. People whom we know by name. Each person has left their own distinct impact on the Chapter generally and on me personally and, looking back, I’m all the better for it. I will always remember the first person living with ALS that I met — Dick B. He was honored at the first golf outing that I helped organize as a volunteer. His courage and personality, wit and wisdom will be with me forever.
I must tell you that this Chapter is a mission focused entity. We are purpose-driven to provide services and support to families living with ALS. Care and cure — that is, and will always be our mantra, until that cure is found. The credit for this incredible focus belongs first and foremost to the incredible professional staff that spends every day caring for our families. And to our board of directors who selflessly give of their time, treasure, and talent to insure we continue to succeed in the pursuit of our mission.
Please join us in celebrating our 40th year, as we commit to honoring the promise and advancing the mission. With your ongoing support we will continue to thrive so that we can achieve what was unimaginable a few short years ago. Consider advancements such as Telemedicine that allows a person who is no longer able to get to an ALS Clinic to be seen by the entire clinic team in their home. It’s being done at two of our clinics today. Eye gaze technology was a game-changer when it first allowed people with no ability to speak or type to access their computer. Wouldn’t it be wonderful if they could also access their environment with this technology — enter Alexa and Ok Google — they can turn on lights, access music libraries and so much more. What else is out there? We want to be part of that future. We want to constantly optimize the model of care for those living with ALS so to serve and empower them to live their lives to the fullest. Please continue to help advance our mission at www.alsphiladelphia.org
As my tenure with the Chapter proceeds to its conclusion, — yes, I have decided to retire at the end of May, I want to thank everyone I have ever known through the most rewarding years of my life for all that you mean to me. You have helped me, inspired me, challenged me, and supported me. I am forever changed and eternally grateful. Keep the hope alive, never give up, honor the promise and advance the mission. With gratitude and blessings.