Amyotrophic Lateral Sclerosis Association

What is your organization aiming to accomplish? Provide quality services to people living with ALS and their families; Provide community education and stimulate public awareness through advocacy; raise funds for local care services and for national research. All to improve quality of life and decrease emotional and financial stress while battling a fatal disease.

Our strategic priorities are: Providing every person with ALS and family access to high quality, consistent and compassionate support services at no cost; Advancing local and nationwide advocacy program to improve quality of life and empower the ALS community; Raise the level of awareness by increasing outreach, communications and community action; ensure continued growth and future strength and leadership by having a diverse, resourceful and engaged board of directors; Have a good business model and philanthropic culture that will ensure chapter sustainability.

We have the infrastructure in place in regards to our staffing model to effectively deliver programs and services and have 100% board involvement working with fund development staff and CEO. Our communications department works to ensure we are reaching the right audiences and that messaging is consistent on how we tell our story and market our services and fundraising efforts.

We track progress on our strategic goals by having specific outcome indicators and measure progress with dashboard reporting for staff and the board.

We have exceeded revenue goals for the past 10 years. The board has increased participation, is engaged in strategic work and fundraising. We have increased awareness and continue to increase face book and twitter fans and followers. We have a succession plan in place for board and staff. We have increased the number of clinic partners and the amount of patients treated at our ALS clinics.

Things not yet accomplished: With the pandemic we have less engagement / participation and fundraising in our new virtual event platform. Events moving forward is still a difficult planning process not knowing if we can hold in person Chapter events; Grant revenue and individual contributions was down this year also due to the pandemic; Meeting patient needs and coordaining care with ALS clincs has also been a new way of doing care and support in a virtual platform and we continue to learn new ways to keep close contact with those we serve, even though home visits have been eliminated due to the pandemic; we have 4 open board seats and we are in need of diversifying our board; we continue to have an unmet need from patients, more than what resources we can give, so we are consistently fundraising to meet more of that critical need.

Programs and Services - Regularly assess efficacy of certified center and ALS specific clinics and our service utilization; Increase number of patients treated at our ALS clinic and increase medical referrals; develop a methodology for cost of care.
Advocacy - active chapter public policy committee; Identify ALS champions for state of MO and IL; Initiate local legislative outreach and public policy activities
Community Awareness - Increase visibility throughout our entire service area; establish meaningful connections / relationships with prospective volunteers, and donors; Cultivate long term relationships with existing families, institutional partners and donors
Governance - Advance board recruitment plan assessing and filling gaps with diversity in mind; Advance succession plan; Increase level of commitment and compliance in board participation requirements; address board development and education needs; ensure strategic direction is aligned with mission and long range plan and that there are measures for success
Finances - have a well diversified revenue stream; further non-event revenue initiatives; refine and fully implement major gift program; identify new grant sources; track retention of donors; involve all board members in some aspect of major gift plan and/or other fundraising and stewardship activities.

We have the infrastructure to allow patients and families their own case manager who provides home (VIRTUAL)visits and a care services team that works in collaboration with community partners to ensure each patient registered is receiving the beast care and support. We are dedicated to evaluation of programs to ensure that we evaluate the outcomes and are providing based on need. Our board of directors are engaged in planning and assessment and involved in fundraising and identifying opportunities. The board works effectively with the CEO driving the mission, addressing challenges and serving as ambassadors for the organization. We have a seasoned development staff who works closely with the CEO and the board to reach fundraising goals. Our communications dept of one works to ensure our messaging is consistent and that we are telling our story. He also assists all staff and board in marketing our services and our fundraising and public policy activities.

It takes $2 billion dollars to develop and get one good drug to market. There are two new treatments for ALS which is exciting for the ALS community. Much more is needed for funding our ALS Research Program. We have established a new grant program for people with ALS and their families called Jane's Angel fund which covers additional expense not covered by insurance and we have been able to increase respite funding due to receiving a Missouri state grant for respite care. With a successful succession plan we have a new President and CEO (previous Development Director) that will start this position after careful transition on Feb 12, 2021. She is also succeeded in the development Director position by our development manager who has started her new position Feb 2, 2021. We are embarking on a new long range strategic plan and will begin to outline strategic priorities and objectives this year in 2021.