State of the Chapter Address
Things to Know About Your ALS Association Chapter
The beginning of a new fiscal year presents the perfect opportunity to share with our valued constituents the State of the Chapter. You deserve insight on our present condition, where we’re headed, our strengths, threats and goals. You should know how we’re structured and funded, what we’re proud of, and what keeps us up at night. In the spirit of transparency, this is a peek behind the curtain, so to speak, at an extraordinary organization preparing for a challenging and somewhat uncertain future.
Fundamentally, we exist to provide care and support to people living with ALS and their families. This we accomplish by surrounding families with a host of direct care services.
Our Structure for Delivering Care
To oversee and deliver the Chapter’s robust patient services program, we employ:
· 5 nurses
· 6 social workers
· 1 mental health professional
· 1 assistive technologist
These committed, compassionate professionals have 131 years of combined experience caring for people with ALS and their families. Presently, there are 1,019 registered patients in our chartered geography; 59 patients reside beyond this region. *
Supplementing Chapter staff are hundreds of home health aides through contracted service providers delivering more than 25,000 hours of in-home personal care per year to patients, which gives family caregivers a much-needed break.
Research has shown that ALS patients attending multidisciplinary clinics have better quality of life. We are proud to align with seven such clinics in our territory that serve as hubs of care and treatment.
Challenges and Concerns
Two factors present a serious challenge to the Chapter’s ability to continue serving patients at the same level to which they have become accustomed and deserve.
1. We have a growing patient population.
The chart illustrates the accumulation effect of new patient registrations outpacing deaths over time. Since 2010, the Chapter has registered 3,043 newly-diagnosed patients while 2,689 individuals lost their battle to the disease. This has resulted in a cumulative gain of 354 patients over the past decade.
2. Patients are going to live longer.
With drugs like Radicava that slow disease progression in early-diagnosed patients, and other promising drugs in the pipeline, people with ALS are going to be living longer. This is fantastic news, but presents a potentially serious long-term financial challenge. It is daunting to wonder what it will cost our organization five or ten years from now to provide the same level of care to each person with ALS when our population is steadily expanding and living longer.
Is our name holding us back? Philadelphia is, of course, the largest market in our territory, but generally speaking, the proud residents of cities such as Harrisburg, Allentown, Seaside Heights, Dover and Gettysburg don’t identify whatsoever with Philadelphia. How do we know? They keep telling us. A change of name reflecting the extensive geography we serve may be in our future. But at what cost, and how would we best implement such a massive project?
Will what has gotten us this far get us where we need to go? “Partly” is the only realistic answer. The changing culture of our times, new technologies and the aging out of foundational leaders who shaped this organization calls for new thinking and different approaches.
Is our current funding model sustainable? While the Chapter enjoys a broad base of annual support, we do not have an endowment fund or earned income stream upon which to rely. Essentially, we start each new year all over again hoping to achieve the operating budget from contributed dollars. An expanding patient population expected to live longer suggests the answer to the above question is no. But what can be done? What changes are necessary?
Giving and Investing - We Need Both!
The adjacent table tells an obvious tale; the overwhelming number of gifts received by the Chapter are less than $1,000, nearly 97%. These small to mid-size level gifts are the very lifeblood of the Chapter, fueling our annual operations. This is a sign of a healthy organization to be sure, but also is fairly limiting. To adequately prepare for our future, we need to also have significant investment.
Ways in Which Almost Anyone Can Help
There are ways to invest in the Chapter’s future that won’t impact current cash flow.
· Assign a bequest in your will. When it comes to leaving your personal legacy, family always comes first. But, options exist to provide for your loved ones while also supporting us.
· Make a qualified charitable distribution through your IRA (for those 70-1/2 or older).
· Name the Chapter as a beneficiary of your retirement account or life insurance policy.
Individuals in a position to make a larger investment might consider the following:
· Gifts through an existing Donor Advised Fund (DAF), or establishing a new DAF.
· Establishing a permanent Named Fund to honor or remember a loved one.
· Tax-advantaged gifts of appreciated securities.
· Helping us establish an endowment fund.
· Making a multiple-year pledge.
Through this communication, I hope you have learned something new about The ALS Association Greater Philadelphia Chapter. Since coming here in 2005, I have been continuously humbled and honored to be part of an organization that does so much for so many.
If you have a comment or question, please don’t hesitate to reach out to me directly at 215-664-4127, or firstname.lastname@example.org.
Jeffrey W. Cline