Our Journey in Big Blue

In our time traveling in Big Blue, we have tirelessly advocated for those impacted by ALS (Amyotrophic Lateral Sclerosis) and endeavored to inform those who know little about this devastating condition. Our mission has always been clear: to amplify the voices of those living with ALS and ensure their experiences shape the narrative and approach to treatment and care. However, never did we imagine that we would have the opportunity to address the neurology profession at its core, at The American Academy of Neurology.

This week, that unimaginable dream became reality. Together with other passionate advocates, we found ourselves at the forefront, participating in a panel discussion that highlighted the immense value of involving those affected by ALS in the conversation. The topic was poignant and timely, emphasizing the mantra that has guided many before us, “nothing about us, without us.” Thank you I Am ALS, for facilitating and arranging this opportunity. Thank you also to Peggy Plews Ogan, our moderator and fellow panelists Jack Silva and Deb Winters.

The audience at our panel wasn’t large, but that was not the point. The significance lay in our presence and the fact that we were being heard. For the first time, our voices resounded within the walls of such a prestigious institutions forum, weaving our experiences into the broader tapestry of ALS research and advocacy.

Addressing the conference attendees was a humbling and exhilarating experience. Our panel brought together advocates from diverse backgrounds, each with unique stories and perspectives. We discussed the challenges, triumphs, and daily realities of living with ALS, offering firsthand insights that are often overlooked in clinical settings. This exchange of knowledge and understanding was invaluable, serving to bridge the gap between medical professionals and those directly impacted by the disease.

One of the most powerful moments came when a fellow advocate shared their personal journey with ALS. Their story was not just a recounting of symptoms and treatments but a testament to resilience, hope, and the unwavering human spirit. Our advocacy efforts at the conference did not end with the panel discussion. We engaged in meaningful conversations with neurologists, researchers, and other healthcare professionals throughout the day. These interactions provided us with a platform to further emphasize the importance of patient-centered care and the need for continued research and support for ALS patients and their families.

As we reflect on this incredible experience, we feel a profound sense of pride and accomplishment. We have carried forward the legacy of the advocates who came before us, ensuring that their voices continue to inspire and influence change. Our presence at the conference is a testament to the progress we have made and the strides we continue to take in the fight against ALS.

It is crucial to recognize that our journey does not end here. The conversations we started at the conference must continue to evolve and expand. We must persist in our efforts to raise awareness, secure funding for research, and advocate for policies that support ALS patients and their families. Our voices must remain strong and unwavering, reminding the world that those living with ALS are not just patients but active participants in their care and treatment.

In conclusion, our time at the conference was a milestone in our advocacy journey. We were heard, our experiences were valued, and our message was clear: those impacted by ALS deserve a seat at the table. We will continue to champion this cause, ensuring that the mantra “nothing about us, without us” remains at the heart of all ALS-related endeavors. Our work is far from over, but we are more determined than ever to make a difference, one voice at a time.

Thank you for joining us on this journey. Together, we can create a future where ALS patients are empowered, respected, and included in all aspects of their care and treatment.

TJO