Advancement of a National Angelman Syndrome Organization Through the Use of a Strategic Plan
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Steven A. Katz - MD, Ann Roth - ASF
The Angelman Syndrome Foundation (ASF) representing those individuals in the United States (US) with Angelman Syndrome (AS) was incorporated in 1992. ASF had its roots as a support group founded at the University of Florida College of Medicine, Division of Genetics by Dr. Charles Williams in the late 1980's. Since its inception, the group has advocated for the advancement of knowledge of AS both by physicians and in families. Initially, ASF was based in Gainesville, Florida and its Executive Director was a genetic counselor from the Division of Genetics. As the organization grew, the country was divided into several geographic regions. Presently, there are over a dozen regions across the US.
In 1995, the organization decided to move its communication headquarters to the Texas business location of its then Vice-President. At the time, this appeared to be a strong decision, but it ultimately was problematic, as the number of phone calls and requests was exponentially growing beyond the capabilities of a family based business. The size and geographic diversity of the US made returning most calls difficult, and routing the calls to the appropriate region almost never occurred. There was growing dissatisfaction amongst the members, membership-questions went unanswered, requests for information went unfilled, and there was a general lack of follow through.
The Board of Directors of the ASF were again faced with a difficult decision, and at this time, in 1997, hired a Director of Communications. She was responsible for returning phone messages and responding to requests for information. All of the other organizational duties, such as publication of a quarterly newsletter, preparing the biennial conference, and soliciting research grants, as well as the day to day functioning of ASF still fell to volunteers from the Board of Directors. However, the Director of Communications decided to pursue full-time studies, and could only devote limited time to ASF, and some phone calls were delayed or missed.
At the same time, the organization grew in both membership and financially, and some difficult decisions needed to be made-the Board of Directors wasn't able to continue the day to day operations of the organization without professional help. Under Past-President Frank McCullough, in late 1997 the ASF Board decided to enlist the assistance of an outside organization named The Avatar Group to begin the process of formulating a long-range strategic plan. Avatar is a private consulting firm specializing in non-profit organizations.
The first thing Avatar did was to send a brief four-question survey to the ASF's membership along with a copy of the ASF Mission Statement and a cover letter from Mr. McCullough. The letter described the process and assured confidentiality. The questions were open-ended with ample room to respond. Any concerns could be expressed on additional space. The questions were:
- Are there any changes that you would recommend to the Foundation's mission statement?
- Is there an immediate pressing issue facing the Angelman Syndrome Foundation?
- What are the long-range issues facing the Angelman Syndrome Foundation?
- Are you aware of any potential funding sources for ASF's future development?
Over 100 responses were received. Avatar collated the results and a meeting was arranged in mid-1998 to discuss the results and begin the long-range strategic process plan. At that meeting, in addition to in-depth reviews of the survey results, several more questions were raised for discussion: Who are we? Where do we want to go? How do we get there? The goal of this meeting was to start answering these questions.
The first item that became clear from the survey results was that ASF membership was unhappy with the communication and organization of ASF. There had not been a comprehensive directory of ASF membership in over 5 years. Other comments included: ".ASF needs to be better organized (with) central control.", "organization needs to hire someone to run the day to day operations.", "parents need to have a quick response to questions", and "better communication to new members". Many members when asked the long-range goals facing ASF responded that organizational administrative assistance was needed. This became our first short-range issue for our strategic plan.
We looked at sources of fund-raising. As a non-profit organization, there are several varied means of raising funding in the US. Many other organizations provide grant moneys both for support and for research, but without a focused plan and a professionally managed organization, it was difficult to go after these sources of funding. Several local groups of AS parents across the US had organized fund-raisers in their communities, with varying degrees of success. The question of how to partner with large, national organizations like United Cerebral Palsy and the ARC (Association for Retarded Citizens) was raised.
ASF and its Board had, and in fact still have, to decide which are the most important issues to pursue, and whether or not our Mission Statement was still valid. We had to figure out where we wanted to go as an organization. Can we still be everything to everybody, or should we become more focused on a particular area, like research. Then we had to decide how we were going to achieve our end results. (Flowchart will be shown).
After the meeting of May 1998, the ASF Board appointed a subcommittee to review and present the strategic goals and report back with a strategic plan. The first order of business was to find and hire an outside management group to run the organization. After a search, the firm Administrative Systems, Incorporated (ASI) of Westmont, Illinois was hired. ASI, headed by Judy Keel, provides the backbone of support ASF needed. Ms. Keel became the Executive Director of ASF, and her well-established staff provides the day-to-day support. The toll-free national phone lines were transferred to their offices. A real live person answers the phone during normal business hours and is available to send out the literature packet the Board of Directors has produced. A list of contact people was developed so that if there are questions they can't answer, there is a somewhat local referral.
ASI maintains the ASF database, and provides the billing and financial support. Membership directories have been produced in each of the last two years. This year's directory had a list of professionals that are familiar with AS and who have agreed to serve as a resource. Our quarterly newsletter is produced in the ASI office, and ASI's staff provided conference management services for the 1999 ASF conference and for our upcoming Angelman 101 Workshop for newly diagnosed families in early October of this year in Houston, Texas. In short, in less than two years, ASF has become fully integrated into ASI. Our account representative, Ann Roth, is here with me to present today.
The Strategic Plan Subcommittee presented its work to the Board of Directors in mid-1999. This 20-page document, which I have with me today should anyone be interested in looking at it after the talk, contains revisions to ASF's Mission Statement and lists five specific Strategic Initiatives. They are:
- To develop and maintain an administrative structure to support ASF activities and programs.
- To deliver education to concerned families, the medical and educational communities, and the general public.
- To serve as an information broker between internal and external audiences via member services, networking, technology and traditional communication vehicles.
- To establish national, regional, and local support systems for persons with AS, their families and other interested parties.
- To promote research activities on the diagnosis, treatment, management, and prevention of AS.
Each goal contains several action strategies specific to that goal. There is considerable overlap between each of the actions, as one action may be appropriate for several different goals. Many of the goals have a timetable for implementation and a financial cost for implementation. In addition, the goals are prioritized into 1 (immediate implementation), 2 (short-term implementation), and 3 (long-term implementation).
When I became President of ASF in August 1999, one of my first actions was to begin the implementation of the Strategic Plan. The previous administration had completed the urgent immediate need of professional support, but most of the other goals, including some that were of high priority had not yet been implemented. At the ASF Conference last August, several focus groups of members were held in various settings to make sure the priorities of the Foundation's membership were the same as those of the Board of Directors. We then proceeded with the implementation of a committee structure to begin the incorporation of the strategic goals.
The first committee developed was the Scientific Advisory Committee. This committee is charged with promoting research concerning AS. In addition, it has the function of developing scientific education for the membership. A second committee was the Local Contact Committee, whose responsibility lies in acting as the local support systems for the membership. In addition, they serve as the liaisons to the administrative office when there is a phone call the office cannot answer. Another committee, Education and Outreach is charged not only with developing the ASF Conferences and Workshops, but also with developing a tool for physicians and educators to learn about AS. The Communication and Membership Committee is responsible for providing information to the membership via the quarterly newsletter. They are also charged with periodically reviewing the packet of information that is sent to prospective members.
The last two committees, Fund Raising and Government Affairs, are probably the most important. They incorporate several different strategic goals. Fund-raising, as the name suggests, is responsible for developing sources of income for the Foundation. They have been asked to research potential grants and alternate sources of income. The Government Affairs Committee acts as an advocate on issues of concern to AS on both a local and a national level.
The development of the ASF's Strategic Plan was a large undertaking. It has already paid off in the association with a professional management firm to handle the day-to-day activities of the organization. Many of the other goals could not have been accomplished without their strong support. This relationship will lead to a more professional and better organized fund-raising effort, which in turn will allow ASF to work toward its original vision of improving the lives of individuals and families living with AS. Thank you for your interest.
|
|
