Rich Paisner is a 12-year astrocytoma survivor and a Massachusetts brain tumor advocate. Rich lives in Newton, MA with his wife and three daughters.
“Hi, I’m Joe. I’m so happy to be here.”
After a series of calls and emails, those were the first words we spoke to one another. I’m pretty sure I won’t call him Joe, but it was really nice to have an informal introduction.
So, who is “Joe”? Let’s rewind two months to the NBTS Washington, D.C.-based brain tumor advocacy day, Head to the Hill.
“The Congressman is committed to the brain tumor community; he supports you all.” Those were the words that came from his legislative aide during our office visits on Capitol Hill, and it’s all I needed to hear. I left 434 Cannon House Office Building with a purpose: I wanted to have a face to face sit down with Congressman Joseph Kennedy III. Yes, of THAT Kennedy family. In fact, he’s the grandson of former Attorney General Robert Kennedy (RFK) and great nephew of both President John F. Kennedy (JFK) and Senator Edward (Ted) Kennedy, who died of a glioblastoma brain tumor in 2008.
‘Dear Congressman, or is it Representative,’ I thought. I’m new at this. Typically, when I email my members of Congress it is through one of NBTS’ advocacy “Action Alerts;” I press send, and their software does it all for me. Left to my own devices, and trying to deliver a truly personal touch, I must have written my opening paragraph 20 times over. Finally, after an hour or so, I pressed send to a member of the Congressman’s district staff to request a meeting.
‘Thank you for your email, I’m out of the office with little access to email. For legislative issues, contact…etc. etc. etc.’
What? An out of office reply! That was my only hope…I thought.
One ring, two rings, three rings. “Thank you for calling, how may I help you?”
I work in sales and tell my colleagues that picking up the phone to cold call someone is no big deal…but I was nervous. Who calls people anymore?
“Hi, my name is Richard [I decided to be very formal and use my full name, not Rich as 99% of the world calls me] Paisner. I have a brain tumor and I’d like to meet with the Congressman when he is in district next month to talk about policy and funding, please.” The delivery wasn’t as smooth as I would have liked, but the message was on point.
“Hello Richard, thank you so very much for your interest. [This was going well, I thought] All you have to do is go to our website and request a meeting. I’m sure the Congressman would love to meet with you.”
OK, so I went onto the Congressman’s website and did just that. In fact, it was much easier than I thought it was going to be. Name, address, phone, why do you want to meet, where would you like to meet, when…the typical questions.
Three days later, my email dings: ‘Thanks for your interest in scheduling a meeting with the Congressman…All my best, Mariah, scheduling coordinator.’ I was at the point where the rubber was hitting the road (insert your cliché). I had never scheduled a meeting with a member of Congress, let alone by myself. So, when in doubt, call Lainey, at NBTS. As Director of Advocacy, she’s been in a million of these meetings. [Note: you can contact NBTS Advocacy team, including Lainey, at firstname.lastname@example.org].
Lainey provided sage advice: ‘Find a good time that works for you both and we’ll be there to support you.’ We talked a little bit about other advocates in the district and emailing Mariah to confirm a time.
‘The room at the congressional office can only hold four people, including the Congressman,’ I was told.’ Yet, we knew of at least eight other survivors and advocates that lived in the district Congressman Kennedy represents, not to mention staff of NBTS.
“Wait, NBTS is in the district, why not invite the Congressman to the NBTS offices?” Lainey and I said the words in near unison.
Rather than bother with wordsmithing another email, I called Mariah and simply asked if we could move the meeting 10 minutes away from the Congressman’s local office to the NBTS headquarters, both of which are located in Newton, Massachusetts. It’s unclear how she managed to move his schedule, but before I could finish the PB&J I was eating at my desk, the meeting was scheduled.
I can’t begin to imagine the amount of work that Lainey put into coordinating the meeting with members of the NBTS staff and the congressional staff, but it all was seamless from my point of view.
“Congressman, thank you so much for coming to meet with us at our headquarters,” David Arons, CEO of NBTS started the meeting. “Your support for our community has been unwavering,” he continued.
There was nearly 20 of us around the table, all connected to brain tumors in some way or another. We went around the room and introduced ourselves to the Congressman.
I had the opportunity to tell my story in a bit more detail. It was amazing, I noticed that the Congressman never broke eye contact with anyone.
Our discussion primarily focused on healthcare reform legislation and what we can do as a community to influence our members of Congress. The congressman then shared his personal experiences with healthcare policy and some great advice on how to continue connecting with Congress as well as the importance of advocates telling their stories.
After about 30 minutes or so, the congressman had to leave to catch a flight to catch back to DC. Before he left, he shook hands with all and gave hugs to many as a last show of his support.
Lainey and I walked the Congressman down to the front door to say goodbye.
“Congressman Kennedy, thank you so much for coming and showing your support. We truly appreciate it; have a safe flight.” I said. And with that, he was off.
I guess, I wasn’t ready to call him Joe…maybe next meeting.
To set-up a meeting with your members of Congress when they return to your district during the Congressional Recess in August, please visit our August Recess Toolkit here.