Live From Washington- Training for the Hill

By Mildred Menos

Hi friends (see how close we’ve gotten already?),

Your trusty reporter Milly here, reporting live from Capitol Hill. Oh, wait, not yet, technically right now I’m reporting from a ballroom in Arlington, Virginia. I haven’t abandoned my lobbying mission though! Today, myself and the advocacy superheroes (note: I have not run this name by them yet!) will be receiving training from the good folks at One Voice Against Cancer in order to get prepared for our appointments with lawmakers.

Before we begin, let me introduce you to the team. These patients and caregivers came a long way to make their voices heard and to lobby on behalf of the crucial funding GIST and other rare cancers so desperately need. They are all as individually fantastic as they are collectively, and I couldn’t be prouder to have them as part of the team!

One Voice Against Cancer

From left to right:

Kristen and Jeannie Dennis– A dynamic mother/daughter duo representing California. Jeannie is full of style and sass but it was her daughter Kristen, an attorney by training, that convinced her to join this Lobby Day trip. Like many GIST patients, Jeannie worried that a day of walking might be too much for her and that she would be over her head in the world of DC policymakers but Kristen encouraged her to take it a step at a time. They both found support through the generous schedule and the other members of their California state delegation with whom they split up the key talking points.

Erin MacBean While this is Erin’s first time on a formal lobbying trip, she is certainly no stranger to advocacy work. Having been diagnosed with a trio of rare diseases at an early age, Erin has become a champion for those who would ordinarily be counted as “too young” or “too rare” to make a difference. She is a founder and Board Member of the Pheo-Para Troopers and most recently has founded GISTKids, a project of the Life Raft Group providing a place for youth affected by GIST (patients as well as their friends and family members) to come together online. Erin will be meeting with Florida representatives on this trip.

Teena Petersohn  Already active in addressing her local Iowa government members, Teena was a natural to come on this trip and take her advocacy work to the next level. Whether it is becoming certified as a GIST Expert Patient, holding her own GIST Awareness Day event or attending LifeFest (with her entire family!), Teena’s dedication and infectious spirit shines through in everything she does. Washington watch out!

Training and presentations began shortly after lunch (how great is it that training begins with lunch? High five OVAC!) with a welcome by OVAC chair David Pugach. Also, the Director of Federal Relation for the American Cancer Society’s Cancer Action Network, David pronounces this his “favorite professional event of the year.” During his welcome David recognizes OVAC’s 2015 “Congressional Cancer Champions,” Peter King (NY) and Donald Payne Jr (NJ) revving my Northeast pride (if one were viewing this as a competition and keeping track of such things…). To follow all the activity from OVAC 2015 follow @OVACinfo on Twitter or search #CancerVoice.

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Next up was Erik Fatemi, Vice President of Cornerstone Government Affairs giving a presentation entitled “Political and Budget Landscape on Capitol Hill”

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Despite starting like this…

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He quickly transitioned to scary charts like this which underscore the severity of the cancer funding deficit

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Now armed with these terrible facts and figures, we needed to know how to communicate this message effectively in a limited time.  Hoping to show the advocates how to ace their meetings was Megan Gordon Don, Vice President of Government Affairs and Advocacy for the Pancreatic Cancer Action Network.

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In her presentation entitled “The Ask”, Megan outlined a few fallback lines for typical representative responses, topics to avoid and the number one most important rule- REMEMBER TO MAKE YOUR ASK!  It seems obvious but Megan explains it can be easy to get caught up telling your individual story and not spend enough time conveying the agreed upon figures that represent increases in the appropriations budget for the NCI, NIH and CDC that you’d like them to sign on to.

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(Erin and Teena hard at work taking notes during the presentations– these are two ladies who will definitely not be forgetting to make the ask!)

After a short break we returned to find the room’s tables reset to reflect our various state groups.  Working within these groups, members were given their meetings schedule for the following day, taken through an interactive role play exercise and shown how to navigate the Soapbox app which served as a central location to store trip photos, get last minute meeting changes, and provide feedback on the receptiveness of the member to increase cancer funding.

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After the day’s training and a reception the LRG group re-gathered for dinner at Ted’s Montana Grill. While there, we found a guy whose look suggests that he finds the decrease in funding for the NIH as unfair as we do!

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(This bison is not impressed)

Feeling left out of the fun? Looking for your own superhero name?  Make sure to join next year’s Lobby Day by contacting me at mmenos@liferaftgroup.org.  You can also learn more about OVAC and the “group ask” we delivered by visiting them at www.ovaconline.org.

Stay tuned for tomorrow’s post which will cover the League of Extraordinary Advocates’ (trademark pending) day on Capitol Hill!

Keep on rafting,

Milly

Mildred Menos
Author: Mildred Menos