FAQ – Growth & Positive Changes for Our ALS Community in Central & Southern Ohio
As of September 1, 2023, the Central & Southern Ohio Chapter and fourteen other prominent chapters will legally separate from the ALS Association. Full operational separation will be completed by January 31, 2024.
These 15 chapters represent approximately half of the ALS patient population, Certified Treatment Centers of Excellence, and ALS Multidisciplinary Clinics in the nation.
The 15 chapters are collaborating closely and will continue to maintain a robust network of information and resource sharing across the ALS community. Each one of the 15 chapters, including Central & Southern Ohio, is an independent organization that is well-positioned to continue effectively meeting the unique needs and responding to key priorities of the local communities that it serves. We will continue to function as a leader in the field, fostering innovation and state-of-the-art programs.
The following FAQ provides more detail on Central & Southern Ohio's separation from the ALS Association.
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, Central & Southern Ohio 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. Central & Southern Ohio 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.
Yes. The impact on our chapter is positive. Central & Southern Ohio is maintaining its independence to ensure access to the highest standard of care and continuity of care for those diagnosed with ALS in 55 Ohio counties. As one of the most effective ALS organizations in the nation currently serving nearly 600 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.
No. First and foremost, we want to assure you we are continuing operations without interruption. Our firm commitment to people and families living with ALS and our fight for treatments and a cure continues.
No services or programs will be cut. In fact, we are growing our programs to serve more people, in more areas of our territory, with more services than ever before.
We will continue to provide high-quality concierge care services tailored to meet the needs of each person with ALS and their circle of support.
Rest assured our organization remains committed to three core mission priorities:
- Care Services coordinated by experienced and licensed professionals supporting people impacted by ALS and their families throughout our 55-county territory,
- Advocacy with federal and state legislatures to secure funding for local care programs benefiting people living with ALS and their families, and
- Research that includes clinical drug trials, basic science, and studies at leading labs and institutions dedicated to finding treatments and cures.
We have a track record of evidence-based, data-driven, client-centric approaches to program development and strategic initiatives. To that end, we are always evolving our programs to reflect the latest thinking and approaches. We will announce new care services via our website, social media, and eNewsletter and look forward to sharing some new offerings in the coming months.
No, advocacy and research will not be impacted by this change. Rest assured our organization remains committed to three core mission priorities:
- Care Services coordinated by experienced and licensed professionals supporting people impacted by ALS and their families throughout our 55-county territory,
- Advocacy with federal and state legislatures to secure funding for local care programs benefiting people living with ALS and their families, and
- Research that includes clinical drug trials, basic science, and studies at leading labs and institutions dedicated to finding treatments and cures.
For decades, Central & Southern Ohio has been advocating for important public policy initiatives to improve the lives of those living with ALS and to accelerate ALS research. Our commitment to leading in this arena is unwavering, and our successes will be achieved, as always, in partnership with the ALS community and advocates who share their powerful stories to affect positive and impactful change. In addition, we've recently ramped up our state and federal advocacy to include issues that are not ALS-specific, yet affect the ALS community in important ways.
We continue to support research initiatives to advance the search for effective prevention strategies, treatments, and cures for ALS. With this change, we will be able to support research institutions directly, including those here in Ohio. We will have new opportunities to support collaborative, innovative, inclusive, and strategic initiatives and engage the ALS community in partnership with ALS clinicians, academic institutions, federal and state agencies, industry representatives, and other nonprofit organizations aligned with our mission and vision.
We are collaborating closely with the 14 other independent chapters separating from the ALS Association. We will continue to maintain and build out a robust network of information and resource sharing across the ALS community. This synergetic network provides opportunities on multiple fronts to maximize our impact, innovate, and achieve economies of scale across the country – all in support of providing the ALS community. We will provide updates as this important collaboration continues to evolve.
Public and philanthropic support, including gifts of all sizes made throughout the year, makes everything we do possible. Central & Southern Ohio does not receive funding from the national ALS Association. In fact, historically, as a federated chapter of the ALS Association, Central & Southern Ohio has been contractually obligated to share a small portion of our revenue with the national office.
To ensure that your financial support benefits Central & Southern Ohio, please note that our organization’s Tax ID Number remains 31-1235704. This number will remain our Tax ID Number going forward.
Yes, and we will retain all of our assets through this separation. Central & Southern Ohio has always existed as a legally and financially independent organization incorporated in Ohio. Professional leadership, responsible fiscal decision-making and oversight, and strong fundraising across many revenue channels has led to long-term financial stability. We responsibly allocate our resources in support of meaningful and impactful mission-critical activities. Per organizational policy and non-profit best practices, we maintain appropriate operational reserves at all times, and plan strategically for service delivery and mission fulfillment. We attract and retain top talent in the field and strive to exceed fundraising goals every year in order to ensure program support and power progress towards preventing, treating, and curing ALS.
Central & Southern Ohio is a transparent and trusted community resource in 55 Ohio counties and a respected leader within and among the spheres we operate, including, but not limited to: the nonprofit sector, ALS-focused organizations, multidisciplinary clinics, ALS research institutions, advocacy networks, and industry. We are enthusiastic and confident in our ability to independently lead and serve our local ALS community.
As always, your gift to Central & Southern Ohio supports our mission-critical activities related to local care, cutting-edge research, and advocacy at the local, state, and federal levels. And with strong commitment to gift stewardship, you can be assured that your gift is well deployed for the purpose intended. We affirm the “Donor Bill of Rights” and share financial statements online so that you can easily see how funding is allocated in support of the ALS community.
Everything we do is powered by people who care about people diagnosed with ALS, and we deeply appreciate your past and continued commitment during this transition period and beyond. Your gifts ensure access to comprehensive, expert care services for nearly 600 people living with ALS and their loved ones, at no charge, in 55 Ohio counties. 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 that provide real help and hope in the search for effective prevention strategies, treatments and cures for ALS.
Please note that our organization’s Tax ID Number is not changing, and will remain 31-1235704 going forward.
To ensure that your financial support benefits Central & Southern Ohio, please mail your gifts to our Columbus address listed in the footer below, or give online at ALSohio.org. Checks made out to the ALS Association Central & Southern Ohio Chapter will still be accepted through January 31, 2024.
Yes. The Walk to Defeat ALS events in Cincinnati, Columbus, and Dayton will take place this September as planned.
Central & Southern Ohio 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. Next year’s events may adopt a new look and feel. Now and always, your ongoing participation is critical to generating ALS awareness and funds for the highly valued programs and services offered by Central & Southern Ohio.
We hope to see you this fall at one of the following events:
September 10 Walk to Defeat ALS - Columbus
September 17 Walk to Defeat ALS - Cincinnati
September 24 Walk to Defeat ALS - Dayton
Click here for more details about each event.
Starting this fall, we will begin a transition period to socialize our new organizational name and identity, which will be announced at a later date. In the meantime, you will continue to see current logos and branding at our Walk to Defeat ALS events and on collateral materials.
As we chart our next steps of growth and development in pursuit of our ultimate vision of ending ALS, we will continue to provide timely updates and we will seek your feedback along the way. We also want to assure you that our essential programs and services including one-on-one case management, clinic support, equipment loan programs, patient grants, support groups, advocacy, events of all kinds, and supporting groundbreaking research initiatives will not be disrupted because of the separation process.
In short, we’re the same good people doing the same great work. Please note we will have the same Tax ID Number: 31-1235704.
In the meantime, we hope to see you this fall at one of the following events:
September 10 Walk to Defeat ALS - Columbus
September 17 Walk to Defeat ALS - Cincinnati
September 24 Walk to Defeat ALS - Dayton
Click here for more details about each event.
With stakeholders committed to our success, we envision expanding our evidence-based core programs to address unmet needs and opportunities to innovate. As we have for many years, we are committed to providing a high standard of care, investing in ALS research, and advancing advocacy matters of crucial importance. In the coming months, you will experience meaningful change for our organization that will include a new name, a new logo, and a continued commitment to excellence, breakthroughs, and people-centric care.
We will share updates as they develop. If you have feedback or questions, we invite you to email ALSohio@ALSohio.org and a member of our staff will get back to you as soon as possible.
Please note that our organization’s Tax ID Number is not changing, and will remain 31-1235704 going forward.
To ensure that your financial support benefits Central & Southern Ohio, please mail your gifts to our Columbus address listed in the footer below, or give online at ALSohio.org. Checks made out to the ALS Association Central & Southern Ohio Chapter will still be accepted through January 31, 2024.