Lobbying for LAM

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By Eden Pontz, LAM Patient and Emeritus Board Member

We often hear about the power of lobbyists/advocates and their ability to take on a specific cause with the goal of influencing change. But when The LAM Foundation decided to gather a group of LAM patients, family and friends in Washington, D.C. to advocate for LAM awareness and the need for continued funding of the NIH, it presented an opportunity almost as rare as the disease itself.

A crowd of amazing, committed, somewhat nervous (I know I was!) members of our LAM community started the day with training from LAM Board Member, and seasoned advocate, Christina Hamilton. She explained the process to us “newbies”. We learned about some of the typical ins and outs, and what we could expect upon arriving on the Hill at the offices of various representatives. We reviewed some important documents and letters that had been written and signed by officials about topics affecting the LAM community and made notes about when to give a special thank you to folks we’d be seeing. We studied up on some “what not to dos”, and heard more about the challenges we’d potentially face in making an impression. We would become storytellers of our individual experiences, but also need to make important broader points in 20 minutes or maybe less.

For anyone who typically only follows politics in what we read or see in media, on this day, we’d be getting an up-close-and-personal lesson into the inner workings of our political system. Democracy at its finest. Here was our chance to be a citizen voice that would be heard.

We were there as part of LAM’s Worldwide LAM Awareness Month, but as it turned out, that very morning, Republican senators revealed their awaited, proposed Healthcare Bill. Healthcare was on the lips and tongues, in the ears and brains of everyone we’d be speaking to that day. Although, with everyone scrambling to learn what those details included, we’d likely have to work even harder to make sure our stories stood out.

Our maps showed us where we’d be going. I was with a small group of fellow New Yorkers and together we cut across swaths of parkland, filled with historic statues and fountains. While en route, we found some great photo spots to capture the Capitol in the background. We walked to the buildings where we’d seek out our appointed representatives. We’d use an underground tunnel to go from one building to another, helping us avoid having to go through security multiple times.

Inside, it was fun to see all the different offices filled with photos, memorabilia or products unique to the regions these politicians represented. Staffers in the offices were cordial and professional, fielding multiple phone calls from constituents while still making sure we didn’t have to wait too long for our appointments. One office offered colored push pins and a giant map in which you could mark where you came from. Another office offered Georgia peanuts. Yet another offered ice cream sandwiches and a poster view of the Las Vegas skyline.

One fascinating thing we learned quickly -- Washington is run by the youth. While many politicians may be the seasoned faces of the different states, the offices stay humming thanks to the hard work of youngsters. We met with quite a few of them as well. It’s surprising how nerve wracking it could be to speak with someone under 25 years old! But they would act as messengers, bringing word to senators and representatives who could potentially choose to act upon them.

My brother, Evan, who joined us in our efforts as a member of The LAM Foundation Board of Directors, helped ease our fears as to what kind of impression we’d leave when he said, “Think about it this way -- we are here to help educate.” So, that’s what we aimed to do. We told personal stories of trials in dealing with a rare disease. We talked about the broader issue of oxygen and pitfalls facing those who need it while still wanting to maintain the best quality of life possible. We explained challenges facing those in the LAM community specifically. We even taught a few folks how to properly pronounce lymphangioleiomyomatosis!

In the end, there were more than 40 of us, who took 50 appointments in a single day. Not a bad tally on an important day in the world of healthcare, and in making sure word about LAM and the importance of continued funding rose to a higher level!

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