From the Desk of the Executive Director: March 2021

Male Hands Typing on a Laptop

This month marks the one-year anniversary of COVID shutting down the world and pushing our Chapter to adapt its core function of serving our ALS community. I have spoken in the past about lessons learned in meeting our mission and our community’s amazing support, leaving the Chapter in a financially secure position. Today, the world sees normalcy in its not-too-distant future, and we can envision our community together again.

Today, I get to share some exciting news for our return to normalcy. Recently, the ALS Association launched its bold, new strategic plan to accomplish our most ambitious goal – make ALS a livable disease by 2030. In achieving this goal, the Association and our Chapter will do whatever it takes to:

  • Ensure people with ALS have access to effective treatments and cases of ALS are being prevented
  • Empower people with ALS to engage with the world in the way they want
  • Reduce physical, emotional, and financial burden of living with ALS
  • Ensure ALL people with ALS and their caregivers receive high quality services that benefit them
  • Create a culture of accountability to ensure meaningful impacts for people with ALS

I was privileged to serve on the ALS Association’s strategic planning committee, which worked over many months to craft this plan. Our work was informed by many constituencies resulting in a strategic plan that puts our ALS community at the center. Our Chapter is excited to get to work and driving our mission to meet this goal.

Bold new goals need bold new ideas.

Today, I am pleased to announce our newest event – the Massachusetts CEO Soak. In 2014, people all over the world challenged each other to take the ALS Ice Bucket Challenge. Now, seven years later, we are asking business leaders across the Commonwealth to join The ALS Association Massachusetts Chapter in getting soaked for ALS once again. 

On June 10, 2021, we will host our 1st Annual CEO Soak in downtown Boston at the Ring Fountain on the Rose Kennedy Greenway with our honorary co-chairs – Josh Cohen and Justin Klee, the co-CEOs/co-Founders of Amylyx Pharmaceuticals. In honoring the legacy of the Ice Bucket Challenge, the Soak encourages employees to raise funds and watch a company CEO or designated representative get soaked in the heart of the city. If you, or anyone you know, wants to participate in this exciting new event, visit our event page to sign up:


CEO Soak Massachusetts Sign Up Image

Thank you all for working with us. We withstood COVID’s best shot and now we are poised to grow and make our ALS community even better. Be well and stay safe.

Author Information:

John Hedstrom is the Executive Director of The ALS Association Massachusetts Chapter. John came to the Chapter by way of Washington, DC and California with an extensive background in health care advocacy and association executive leadership. He has effected change and served as the front-line voice for multiple national organizations, establishing himself as a trusted resource for many constituencies. John was born and raised in Massachusetts and now resides in the area with his wife and three children. In his tenure at The ALS Association Massachusetts Chapter, John has worked tirelessly to lead the Massachusetts Chapter to the forefront of the ALS Association. He continues to prioritize providing our families with more comprehensive care services, funding additional research, and more robust advocacy efforts.

Join the conversation. Please comment below.

1 + 1 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.