Pancreatic Cancer Advocacy Day - Charity Photography

For those of you who do not know, I lost my incredible father in January 2006 to pancreatic cancer. He had been an Emergency Room physician and devoted his life to saving thousands of people in ER's around the country or anywhere else he was when he saw someone needing medical help. We always stopped at car accidents and other emergencies when we were all out in public. Now my mother had a degree in criminal justice and law. She had an incredible legal mind. Sadly (5 years after my father died) I would also also lose my mother because she lost her health insurance when my dad/her husband died and she could not get any other health insurance because of her pre-existing conditions. I needlessly had to watch her suffer from 7 major strokes and countless mini strokes and seizures that all could have been prevented if she could have had the expensive, life-saving medications. So, I say and feel that I lost both of my parents because of pancreatic cancer. 

My mother and father met and got to know many elected officials through their tireless work to help everyone (regardless of their ability to pay or income level) receive emergency care when they needed it the most.  My mother would help write the legal words for laws. My father held an elected office with the organization, the American College of Emergency Physicians (ACEP), which is made up of all the ER doctors in the country. Together they would to try and get medical legislation passed. The two most important pieces of legislation that they worked on together (with many other people) were (1) the 1986 law knowns as the Emergency Medical Treatment and Active Labor Act (EMTALA) was passed as a part of the Consolidated Omnibus Budget Reconciliation Act (known as COBRA). It requires hospitals to provide care to anyone needing emergency healthcare treatment regardless of citizenship, legal status or ability to pay. It also set up COBRA insurance, which is when a person dies or loses their job and health insurance benefits, it allows the person or family member to pay the entire premium and keep their same insurance for either 18 months (after a loss of job) or 36 months (after a loss of spouse or parent). We lived just outside of Washington, D.C from 1982-1991 and my parents went to D.C. often fighting for new legislation to get written and passed during that time. (2) My parents worked to get the original "Patient's Bill of Rights" written in 1990 (with the Association of American Physicians and Surgeons known as AAPS) which was adopted in 1995. We were living in northern Virginia when it was originally drawn up and then Alabama when it later passed. This piece of paper is printed and displayed at all hospitals and medical facilities throughout the nation to show what rights you, as the patient, have when being provided with medical care.  

Because of my parents long crusade in working with Presidents, Congress and other elected officials, I wanted to honor their legacies by being a part of the Pancreatic Cancer Action Network's Advocacy Day in Washington, D. C. from June 24-26, 2012. Please check out their website at www.pancan.org . There were 650 caregivers and some survivors who marched onto Capitol Hill, where we painted the place purple and met with the offices of all 100 Senators and more than 371 out of 435 U.S. Representatives. Below are just a few of my photos from those 3 days.

Pancreatic cancer merchandise

The registration table at the hotel. 

I just loved all the D.C. photos in the background.

During the event, we are all encouraged to wear our best

"purple" ensembles. Everyone looked fabulous especially

these two participants!

General Session is where all 650 of us went during the 

first day. It blew my mind to see so many people there, that 

just like me had been affected by pancreatic cancer.

 I was truly inspired to meet for the first time, a survivor

of pancreatic cancer (the gentleman seen in the photo below).

Sadly there are very few survivors and most people don't

make it to the 1st anniversary after their diagnosis with

this form of cancer. All of us went to try and get this 

statistic to change (and change drastically) in the future.

 A panel of scientists and medical doctors who are

experts in the field of pancreatic cancer research 

and/or care spoke to us during one of the days we were 

there. It was definitely disheartening learning more

of what we are up against, but encouraging seeing

how many people are in the fight to change things!

 Seen in the photo below (on the left) is the Chief Ambassador 

of Hope, Lisa Niemi Swayze (who joined the fight in honor

of her late husband, actor Patrick Swayze). Beside her is the 

President & CEO of the Pancreatic Cancer Network Action,

Julie M. Fleshman, JD, MBA. They spoke to the crowd

to get us all revved up for the task at hand - hitting the streets

of D.C. and telling our personal stories of either loss or

survival to all of our elected officials.

 The magnificent, United States Capital Building.

We had a gorgeous day (though it was incredibly hot)

of the main event - where we were broken down into

teams based upon the states and districts in which we live

to go and visit with those Senators and U.S. Representatives. 

We each were able to tell our personal stories to them

in those hopes that legislation could get passed to have

more research to fight pancreatic cancer.

 All 650 participants got together for a group shot on the 

steps of the Capitol Building. I found this so inspiring!

 Here we all are chanting, "Know it, Fight it, End it!"

Front and center in the black suits are the President & CEO,
Julie Fleshman and Mrs. Swayze.

 I was able to introduce myself and speak with Mrs. Swayze to 

tell her about my parents and how I remembered that

 both her husband and my father were only 57 years old
when they passed away from the disease.

 The Philadelphia area delegates at the Capitol.

 We went to several buildings to meet with our elected officials

including the Capitol Building as well as this building, Rayburn,

where many U. S. House of Representatives have their offices.

 I spend much of my time with these ladies. We all live in Central 

Pennsylvania.

Here is a large group shot of all the delegates who came

from the Commonwealth of Pennsylvania. We all went

and met with our two U.S. Senators offices (Senator Robert

Casey, Jr. and Senator Pat Toomey).

I will continue to give of my time and resources as well as my photography to this meaningful cause in honor of my incredible parents, Dr. Sam and Mrs. Carol A. Heard. I love you mom and dad!