A Message to the COPD360social Community

Posted on June 23, 2020   |   

This article was written by Jamie Sullivan, MPH

Hi Friends,

Earlier today I sent the below message to our State Captain Network, but I wanted to share it with you as well. I consider all of you as part of our extended family of advocates and champions for the community and I am so grateful for all that you do to support each other and for how you support the COPD Foundation team. It is very bittersweet to post this but rest assured it is not goodbye for good, I am an honorary member of this community for life and will always carry your voices forward in my work.

Dear State Captains,

Sixteen years ago I was a college student in Miami staring at a job board I saw on a walk across campus when my eye caught a listing for an off-campus work-study position for a place called the Alpha-1 Foundation. The prospect of working somewhere other than a campus office filing and answering calls was thrilling but little did I know this chance walk by the job board would shape the rest of my life in the way that it has.

Over the next decade, I was privileged to learn from the best. John Walsh, the founder of both the Alpha-1 and COPD Foundations, was one of a kind for so many reasons, including his ability to build organizations, innovative programs, and consensus where people thought it was impossible. He was also a one of a kind boss. He believed in his team and this act of having more confidence in me than I probably deserved at such a young age, taught me I could not only find creative ways to make John’s ideas a reality, but I could seek out and form ideas on my own. His commitment to the notion that if you have a role in the problem you are trying to solve, you have a role in the solution, shaped my approach to building impactful collaborations and above all, his firm belief in the role that patients and caregivers play in ALL conversations, scientific, clinical, policy and more, will ground all future work I do.

Why am I telling you this personal story? As some of you may have heard, this is my last week at the COPD Foundation. After over a decade of experiences across our organization, I have decided to pursue a new opportunity with the EveryLife Foundation for Rare Diseases starting in July. While this is a very bittersweet decision to make, it is the right one for our family and at this stage in my career.

When I helped create the State Captain program, I did so to formalize a way for you as advocates to have a voice, a way that we as staff can keep you updated with the latest information and a way that all of us could learn from each other and ensure we were addressing the issues that have a real impact on your lives. Many of you have become like family and I have learned so much from you personally and professionally, including how to face adversity and challenges every day and still have the determination to help other people as so many of you do.

While I am departing my full-time role I want you to know that I will always be a part of this community and will remain a champion for you in DC regardless of who my employer is. I intend to stay in touch and volunteer where I can, and I hope that the relationships we have formed will continue beyond my time at the COPD Foundation.

So now, what does this mean for the State Captain program and our policy efforts? Rest assured that our team will still be here to support you. I leave you in the very capable hands of Stephanie Williams who has already taken on a much bigger role with the program in recent months. You can continue to email [email protected] whenever you have questions, comments, or requests related to State Captain activities. Many of you have met Dave Zook, our policy consultant from Faegre Drinker. Dave will take on a bigger role in the short term, making sure our important priorities like CDC appropriations, funding for the COPD National Action Plan, and dealing with access to care issues among others, continue to move forward. Dave is a great champion for our community in DC and I am sure he will make sure that your voices are represented.

I am so grateful and humbled by the support from this community, but our success at the COPD Foundation and my success personally is all a result of the efforts you all put into raising your voices, sharing your stories, and encouraging others to do the same. As the COVID-19 pandemic carries on I hope you are all taking special care of yourselves and your families and for those that are able, I hope you continue to reach out, get involved from the safety of your homes and make sure that policymakers at all levels understand what the COPD community needs now and in the future. Never forget or doubt how powerful your voices are!

You can always reach out at [email protected] in the future. I look forward to our paths crossing again soon and please stay healthy and enjoy the summer.

Warm Regards,


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