ALS United North Carolina

Growth & Positive Changes for Our ALS Community in North Carolina

A Letter from President and CEO Dave Shore:

On behalf of our organization’s Board of Directors and staff, I have important news to share with you.

We are happy to announce that our name is changing to ALS United North Carolina. While our name and look are changing, our dedication to the local ALS community is stronger than ever. This is the next step in our organization’s evolving pursuit of excellence in service of those in North Carolina suffering from ALS, their family and professional caregivers, as well as loved ones.

As of September 1, 2023, our organization, rather than forfeit our long-held organizational autonomy, along with 14 other mission-aligned state chapters legally separated as members of The ALS Association. This group of organizations, including ALS United NC, represent nearly half of the patient community and more than half of the Certified Treatment Centers of Excellence and multidisciplinary specialty clinics. This exciting decision empowers us to deepen our service to North Carolinians with ALS, leveraging our unique position as local neighbors to understand and flexibly meet the distinct needs. While the core values and core services will remain unchanged, many exciting improvements are underway as the separation will be complete by Jan. 31,2024.

Each of the 15 organizations, while maintaining autonomy, is committed to collaborating closely and will continue to maintain a robust network of information and resource sharing.

Our intentional choice to include ‘united’ in our names speaks to our commitment to maximizing our impact fighting for a cure and helping people with ALS live their lives to the fullest, while staying independent to best steward our resources towards the communities we each know and love. Since 1987, ALS United NC has always operated with a carefully implemented strategic vision, and we are seizing a rare opportunity to achieve better outcomes with greater efficiency, alongside several other amazing organizations with the same goals.

ALS United NC proudly serves more than 900 people diagnosed with ALS in North Carolina through care services, advocacy, research, and public education and awareness. Through many years of dedicated service, ALS United NC prides itself on knowing these individuals on a deep level and understanding what it takes to deliver helpful services, build meaningful relationships and forge deep connections to assist in the fight against ALS, both now and in the hope-filled future ahead.

Our board chair, Douglas Noreen and I are committed that this unified mission will push us forward even more in the relentless pursuit of discovering treatments and a cure for ALS. Together, as a board, staff and our volunteer community we are dedicated to serving, advocating for, and empowering those affected by ALS, enabling them to embrace life for years to come.

Same mission, same people, new name!

In partnership and gratitude,

Dave Shore
President and CEO
ALS United North Carolina

Frequently Asked Questions

Why is this change occuring?

Initial action was taken in July of 2021 immediately upon notice of the national office’s plan to force the dissolution of all independent chapters. At that time, the national Board of Trustees of the ALS Association voted to begin a process of merging all 34 independent chapters across the country into a single organization headquartered in Arlington, VA. That vote effectively called for the elimination of independent chapters like ours.

After thoughtful deliberation and an assessment of the impact on the communities we serve, North Carolina chose to maintain our corporate autonomy to ensure the highest standard and continuity of care for our ALS community, while facilitating the search for effective treatments and cures. North Carolina has been a trusted resource in our territory for decades and we are the largest ALS patient service organization in the state.

In January of this year, fifteen chapters initiated legal action to preserve their independence. That litigation ended in June 2023 when all parties reached an agreement with the national office, after two years of discussions. The parties agreed to a resolution including our independence and enabling the Chapter’s Board of Directors to continue allocating our financial resources in a manner that best fulfills the needs of local patients and families who rely on us for care

Is this a positive change for North Carolina?

Yes. The impact on our chapter is positive. North Carolina is maintaining its independence to ensure access to the highest standard of care and continuity of care for those diagnosed with ALS across the state. As one of the most effective ALS organizations in the nation currently serving over 900 people diagnosed with ALS, as well as many family caregivers, professional caregivers, and loved ones, we will leverage our expertise in creating access to robust community-based care services, strong advocacy at the local, state and federal levels as well as within healthcare systems, accelerating research, and delivering public education and awareness programs to benefit the ALS community long into the future.

Will this affect the Care Services for the ALS community in North Carolina?

ALS United NC is committed to helping people live longer and better with ALS by providing comprehensive, integrated, multidisciplinary community-based care at no cost to the ALS community. Our programs are designed to meet essential care needs for the person diagnosed with ALS, as well as family caregivers. Every client will continue to have access to our programs, including our equipment loan program featuring both medical equipment and communication devices, our monthly support groups, resources for children and families, bereavement support services and educational programs. We will continue to support our six ALS Clinics and Certified Treatment Centers of Excellence, and opportunities to participate in important advocacy activities and research initiatives.

Will the walks or events change?

Whether you are interested in our annual walks, or our many other events held throughout the year, ALS NC staff and volunteers will continue to provide a cherished array of vibrant and meaningful opportunities for you to connect with and support our ALS community. Some, but not all, of next year’s events may adopt a new look and feel. ALS NC is going to look to expand our local resources and ALS care, informative mission updates, volunteerism, and the ways we engage with our community.

When I donate to ALS United North Carolina, how are the funds used?

As always, your gift to ALS United NC supports our mission-critical activities related to local care, global research, and advocacy at the local, state, and federal levels. You can be assured that your gift is well deployed for the purpose intended. Your gifts ensure access to comprehensive, expert care services for more than 900 people living with ALS and their loved ones, at no charge. In addition to supporting access to the essential care and support that helps individuals live longer and better with ALS, you make it possible for the ALS community to participate in critical advocacy and research opportunities.

To ensure that your financial support benefits North Carolina, please note that our organization’s Tax ID Number remains 56-1609591. This number will remain our Tax ID Number going forward.

How can I get more information?