In late June, volunteer leaders from the 15 unifying chapters gathered for the inaugural Mission Advancement Conference (MAC). The purpose of the conference was to 1) focus on the impacts that we want to have for people living with ALS and their loved ones; 2) collaborate and cultivate greater connection among our One Team; and 3) better understand how our spending can impact our Mission.
Ken Menkhaus. a member of the Board of Trustees who was diagnosed with ALS in 2018 attended the MAC in Charlotte, North Carolina and captured some thoughts on the day to share with volunteers and staff:
“While I would never presume to speak for everyone living with ALS – we are far too diverse a group for that – I believe that the entire community would be grateful for what happened in Charlotte that day. I do believe this meeting embodies everything that we hope for and expect from the Association. The volunteer leaders from our unifying chapters and the home office staff spent the entire day discussing our mission, our service to people with ALS and their caregivers – as a single team, united in purpose.”
After a day full of discussions of new possibilities and new ways to make use of specializations across the entire Association, to coordinate loaner closets, to share good practices, and how to ensure we provide all people with ALS and the caregivers, regardless of their geographic location, the same high-quality support there was a lot of momentum as the MAC concluded. Says Ken, “This is exactly what we want to see, and exactly what I have hoped for during my three years of volunteerism with the Association. I have never been more hopeful about the Association’s work, impact, and future than I am following the MAC.”
The Mission Advancement Conference showed what’s possible when we are united as One Team. Congratulations to all who participated and thank you to each of you who serve our mission to improve the lives of people living with ALS and their families and caregivers. We are grateful to Ken Menkhaus for taking the time to participate and offering his thoughts and would like to share with all of you his summary of the day.
Transforming the Experience of Living with ALS
The day began with a discussion of how exactly we can transform the experience of living with ALS. The group of over 75 volunteers and staff discussed specifically how to direct our attention on the impacts we want to have for people living with ALS. These three impact pillars – longer lives, improved quality of life, and preventing ALS -- helped guide our discussions the rest of the day.
The conversation then turned to our new model of Distributed Mission Delivery. This approach builds on our strengths of local presence and direct relationships, while allowing for us to test different approaches and measure/share results.
Considering Existing Programs and Services
Toward the middle of the day, leaders from our unifying chapters shared all the programs and services they fund and connected them to specific impacts – longer lives, improved quality of life, and preventing ALS.
Investing Cash Reserves
A good portion of our discussion revolved around enabling our unifying chapters to spend their cash reserves in ways that help them achieve the impacts they want to have. The leadership team provided some helpful tools to help local volunteers make these decisions. We discussed specific interventions, sustainability, existing resources and programs, and other needs. Throughout the discussion, it was repeatedly made clear that unifying boards have the right and ability to spend their reserves on initiatives that enable mission impacts as they see fit.
Exploring the Possibilities of Using Unified Data
In one of the most inspiring portions of the program, we explored some data maps put together by Pat Dolan, a person living with ALS who is an expert in GIS – geographic information system. Using data gathered from throughout the Association, we were able to see where there were service gaps and how a new certified or recognized treatment center could impact a certain number of people living with ALS in that area. These maps were not bound by our organizational structure but were informed by the people living with ALS in surrounding states and their needs. You can view a quick video about Pat Dolan by clicking here.
Diving into Impact Pillars
Our afternoon discussions included deep dives into our three impact pillars – longer lives, improved quality of life, and preventing ALS – and how unifying chapters could spend their reserves to specifically achieve these impacts. We heard some specific examples of how the chapters have created programs and initiatives to accomplish impacts.
Energizing Community Leadership Councils
Our final discussions of the day regarded the essential role of Community Leadership Councils (CLCs) moving forward. Comprised of volunteers who served on chapter boards, the CLCs will help inform, engage in, and assess our strategic plan outcomes and impacts, while also helping local leadership staff conduct budget planning to ensure optimized mission delivery.
Final Impressions
Toward the end of the day, we heard from many volunteers who shared their feelings about how inspired they were by the MAC and the overall direction of the ALS Association.
Here are a few audio clips:
