By Chris Edwards
Former Board Member
Area patients and families living with ALS know they can quickly find the comfort, information and aid they need at the ALS Association—DC/MD/VA Chapter. Few probably realize, however, that the vibrant organization they encounter today arose from much humbler beginnings only 19 years ago. That transformation is a tale of luck and grit, courage and commitment.
In the beginning
In the late 1980s, two independent support groups in northern Virginia and Montgomery County, Md., led by Beth Hampton and Crystal Marcus, respectively, were providing monthly support to roughly 40 people living with ALS (PALS). Their success prompted the national ALS Association in 1990 to suggest to local ALS volunteers that a D.C. chapter of ALSA be created. With seed money and the loaned expertise of management consultants, the ALS Association National office then coached this small band of volunteers through the nonprofit startup process.
Accordingly, the National Capital Area Chapter (NCAC) of the ALS Association was incorporated on April 26, 1991 with a service area covering the entire states of Maryland and Virginia, plus the District of Columbia. The Chapter’s mission then, as now, was to improve the quality of life for ALS patients and families and support research initiatives leading to a cure.
During those early years, the fledgling NCAC, under the leadership of initial board presidents Melinda Deriso, Henry Bodson, and Bob Cavedo, solidified its relationship with its National parent, built a volunteer base, began “The Iron Horse” newsletter and honed its organization. Despite the early successes, the Chapter’s future was far from assured. Fiscal uncertainties often provoked fierce debate as the cash-strapped board grappled with how best to spend tight resources.
The power of fundraising
Over time, the Chapter slowly developed more sophisticated fundraising skills. Donations and occasional events, such as a choral show, memorial runs and baseball-themed outings, for several years yielded modest annual revenues never topping $30,000.
The income flow eventually stabilized enough to support the brief hiring in 1995 of a part-time patient services coordinator. Her successor, Tamela Watkins, pioneered the Chapter’s program of home visits and a loan closet, programs further developed by Robin Swope, who was hired in 1998 when Tamela left. Lacking an office, Robin and her volunteer nurse colleague Joan Deye had to answer phones from their homes and haul around medical equipment in the trunks of their cars.
Strong leaders are the key
By the late 1990s, the organization needed a full-time, paid executive. After a couple of ill-fated attempts to find a long-term head, the board in 1999 finally landed psychologist Pat Frieberg, who immediately recognized that fundraising had to expand exponentially if the organization were to establish a truly professional presence. Pat pursued more effective ways to boost revenues through such means as the Combined Federal Campaign and corporate partner Booz Allen Hamilton.
The next couple of years proved a time of rapid growth. In May 2000, the heretofore “homeless” Chapter finally settled into rented spaces in Gaithersburg, MD. Around that time, too, fundraising moved into the big time with the first annual Walk to Defeat ALS ®, held in October 2000. That single event generated nearly $260,000 a virtual windfall.
With a permanent home and a robust balance sheet, the Chapter could now grow its staff, and expand it did, adding an assistive technology manager, more patient services staff and support personnel.
The medical equipment loan closet soared to more than 500 pieces, while two new support groups started up. Fiscal soundness meant, too, that the Chapter could finally serve more far-flung patients. A freestanding support group in Richmond folded into the Chapter in 2001, and patient services expanded into Charlottesville, Va. Such successes earned NCAC ALSA National’s Chapter of the Year award for 2001.
Poised for growth
By the time Pat departed in May 2004, the newly retitled ALS Association—DC/MD/VA Chapter was poised for new opportunities. Ken Nicholls, an experienced nonprofit administrator, and the enthusiastic staff developed new sources of funding, expanded the computer system and added four new Walks.
By the end of 2005, the Chapter, operating with a budget of nearly $1.4 million and a staff of 13, was serving almost 350 patients and preparing to move into larger, more accessible headquarters.
Looking toward the future
As the Chapter closes in on its 20th anniversary in 2011, the operating budget is $2.5 million with 20 full- and part-time staff and serving over 500 families. The ALS Association – DC/MD/VA Chapter is one of the top three Chapters within the organization and was recognized in the Washington Business Journal as the 15th most profitable not-for-profit organization in the DC metropolitan area.
The financial success of the Chapter can be attributed to the support it receives through the Walk to Defeat ALS®. This campaign allows local corporations to support their employees who are connected with the disease and more importantly it gives the ALS community an opportunity to unite and support each other.
Looking back at the past 19 years, veterans of the early years regard the long hours and stress of the Chapter’s startup as a small price to pay for the chance to belong to a dedicated group helping so many incredible people. Joan Deye recalls at one board meeting then-president John Burgett “…asking during a heated debate over money whether the patients were better off with us or without us. Of course, everyone agreed we were needed.” That test of our viability still resonates today. “Even if we can’t take the disease away, I know in my heart,” Joan says, “they are better off because this Chapter exists.”
Contributors
This article was originally authored by Chris Edwards, former Board Member with input from fellow Board Members Joan Deye, Crystal Marcus August, and Henry Bodson, as well as past and current staff members Pat Frieberg, Robin Swope, and Ken Nicholls. Additional edits by Christine Kirkley, Director of Fundraising and Community Relations.
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