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Message From The Volunteer Advisory Council

PanCAN Advocacy

I truly love advocating for something I believe in.  Obviously, I believe in the mission of PanCAN and helping all those affected by this terrible disease, and I think it’s important to support legislators who support the pancreatic cancer cause, regardless of their political affiliation.

I met my U.S. Representative, David McKinley (R-WV), on the campaign trail when he was first running for Congress.  He didn’t have a connection to pancreatic cancer, but I invited his wife Mary to an event we were having to make “Purple Scarves of Hope.”  Mary was a critical care nurse who knew all too well about pancreatic cancer.  This was the start of a great relationship with Congressman McKinley.

Congressman McKinley has been wonderful to work with!  From the beginning, he listened to everything I had to say, and over the years, I became his connection to pancreatic cancer.  He supported PanCAN’s legislative efforts because of his relationship with me and my family.  As a result, he has become one of PanCAN’s strongest champions in Congress, partnering with Congresswoman Anna Eshoo (D-CA) and others to demonstrate bipartisan support for a dedicated pancreatic cancer research program at the Department of Defense.  That program became a reality in December 2019, thanks to the combined efforts of our champions in Congress and PanCAN’s nationwide network of grassroots advocates.  Since then, Congressman McKinley has continued to lead the charge in calling for increases in funding, including this year, spearheading a letter with Rep. Eshoo and Congressman Andre Carson (D-IN) in support of $20 million for the Pancreatic Cancer Research Program for its fourth year.

Congressman McKinley won’t be returning to Congress next year, which is a huge loss for the pancreatic cancer community, but I am grateful for all that he’s done to advance the cause and for the relationship I’ve been able to build over the years.  He knows me by name, and he knows my daughter by name.  Each year when we visited his office, he would ask my young daughter to sit in his seat and pose for a picture.  He said she would be sitting in that chair someday.  As part of PanCAN Advocacy Day’s Young Advocates Training in 2014, she wrote a letter to Congressman McKinley, and he was so moved that he read it on the floor of the House of Representatives.  I never would have dreamed that not only would my daughter’s name be mentioned on the House floor, but also my brother, Jim, who died of pancreatic cancer and is my inspiration for being an advocate.  Sometimes, if I feel that I’m not doing enough, I will watch that video to inspire me to keep going.

Here are my suggestions for building great relationships with members of Congress:
  1. Use every opportunity you can to speak up for pancreatic cancer patients when you see members of Congress out in public.  They – and their staff – are often your neighbors, members of your community, so don’t be afraid to say hello if you see them out and about. Keep purple ribbons with you, and don’t hesitate to wear them. 
  2. If your member of Congress or their staff want more information, make sure you follow up with them. (Pro tip: email advocacy@pancan.org if they have questions you can’t answer!) Show them that you can be a resource, someone they turn to when they have questions about pancreatic cancer.
  3. Keep up with all of their activities and what is happening in the district. Knowing when NOT to reach out is just as important – if there is a nasty flood in their district, immediate follow up may not be appropriate (yes, that happened in West Virginia).
  4. Stop by the local office to say hi when you are in the area.
  5. Know that building a relationship takes time – don’t expect to get everything you ask for in your first meeting, and don’t be discouraged if your initial efforts aren’t successful! Keep at it!
 
  • Written by Annette Fetty-Santilli, VAC Member

 
Posted by Paula Mukherjee on Jun 9, 2022 6:00 AM CDT