The Palatucci Advocacy Leadership Forum—Gaining a Globally Relevant New Skill

In case you think the Palatucci Advocacy Leadership Forum is only relevant to US-based AAN members, check out Mamta Bhushan Singh’s inspiring blog about her experiences as a PALFER

On being a PALFER

Mamta Bhushan Singh, MBBS, MD, DM
Neurosciences Centre, AIIMS

In 2008, I applied for the Palatucci Advocacy Leadership Forum (PALF) on an impulse. I had recently heard about PALF and was mostly curious. “What could they talk about, teach”, I wondered! I am happy that I am prone to taking such random leaps of faith. This was one decision that has had a profound effect on my work and me.

From an international member’s perspective, especially if one comes from a far away land like India, the commitment to be initiated into PALF is serious business. Just the travel from India to any location in the United States is not for the faint hearted! Of course, once the travel is over and one is successful in blocking the impending return journey from one’s consciousness, the meeting is full of excitement, fun, learning and challenges. As a relative ‘outsider’ I had initially harbored some inhibitions, concerns and insecurities. What I perceived to be ‘my’ patient’s problems were in my opinion going to be so different from problems that my American colleagues’ patients must face. The daily struggles, frequent bureaucratic roadblocks, lack of resources were my problems. Would a largely American audience even understand? These were my thoughts when I knew no better.

The PALF experience starts from the time that one gets accepted into the forum. The meticulous planning, preparation and persistence of the administrative staff leading up to the meeting impressed me. Everything from how we were expected to dress, what our dietary preferences were to what needed to be read leading up to the meeting and who we could contact in case we needed help was informed to us multiple times. I was full of anticipation when I arrived at Fort Lauderdale.

The extended weekend over which the PALF meeting is held is an action packed time. Days start early and the schedule is meticulously stuffed with activities leaving little spare time. There are segments of the training that are more useful and relevant for international attendees than others. Three broad areas are covered: Action planning, media relations and legislative issues for grassroots advocacy. The cornerstone around which all other agenda are planned and developed, is ‘Action planning’.

Most trainee advocates come with a broad area of advocacy in their mind that they plan on pursuing. Action planning is instrumental and is refined, distilled and crystallized over many long hours. What emerges at the end is a definite plan of action with measurable outcomes that have to be achieved over a defined timeline. One reaches PALF with a nebulous, often conflict-ridden and sometimes, grandiose plan; and leaves with brass tacks beckoning one to get started immediately! I think this ‘Action planning’ concept can be credited for a lot of success stories emerging from the work of PALF graduates.

After I graduated from PALF, I still faced some initial teething problems and inertia in embarking on my ‘formal’ advocacy journey. For this, I can only blame myself. One does get caught up with patient loads, teaching, writing and so many other competing interests. However, once I managed to get started, I learnt to manage my time better. Every tiny milestone is an encouragement. There are so many friendly Palatuccians who I could always count on for advise, for help and for inspiration. Just knowing that there are people like me who are working against great odds and in equally difficult circumstances, just so that our patients get a better deal, drives me on.

As an international PALF graduate I have many things to be grateful for, many reasons to feel special. First of all, even being picked, to get started on this journey seems like a miracle! The application process is difficult and the odds of being accepted are not too great. Each batch has 2-3 international advocates. For potential PALF aspirants, I’d say, one should not be daunted by such trivia. If you are passionate about it, go for it! Also, if you do not get it the first time, don’t let that put you off. Try again. What PALF gives one is not limited to the skills of action planning, handling media and for American advocates, an orientation to the legislative procedure. There are more rewards even outside of the curriculum. These rewards, in fact, are at least as precious as, if not more than learning what one has signed up for.

After graduating from PALF, I have gone back to it three more times in different mentoring roles. Each time one is fortunate to join this group; one comes back more enriched, more determined and more challenged. There is some intangible but very real effect of being with this group of determined and focused colleagues each of who is trying to achieve something. Importantly, everyone is trying to achieve something for a greater good, looking beyond his or her own personal ambitions.

In the final analysis, to me PALF means getting nurtured. I discovered within myself: confidence, resilience, and perseverance that I was not even aware existed inside me. Fellow Palatuccians have been so kind and generous. Many have become good friends, mentors, research associates. My advocacy journey continues. I hope to be able to do more for epilepsy patients in my country. Whenever, I feel overwhelmed by the task at hand, I know I can always return to PALF and recharge my batteries!

Go to our AAN Channel to learn more about becoming a PALFER.

Gretchen L. Birbeck, MD, MPH

Gretchen L. Birbeck, MD, MPH

Gretchen Birbeck is a neurologist who divides her time between the US and Africa. Her US academic home is the University of Rochester where she is the Rykenboer Professor of Neurology and Research Director for the Strong Epilepsy Center with adjunct appointments in the Center for Human Experimental Therapeutics and the Department of Public Health. Her additional skills in epidemiology, health services research, and tropical medicine are brought to bear during the 6-months annually she spends in Africa where she serves as Director for the Chikankata Epilepsy Care Team in rural Mazabuka, Zambia, an Honorary Lecturer at the University of Zambia and a consultant for the Paediatric Research Ward at Queen Elizabeth Central Hospital in Blantyre, Malawi. Gretchen’s research programs are aimed at identifying opportunities to prevent or ameliorate the medical and social morbidities of common neurologic conditions in low-income, tropical settings with the ultimate goal of developing successful interventions feasible for scale up and broad implementation. She has been recognized as an Ambassador for Epilepsy by the International League against Epilepsy, a Global Health Research Ambassador by the US Paul Rogers Society, a National Outreach Scholar by the WK Kellogg Foundation and a Leader in Medicine by the American Medical Students Association.

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