Kick Pancreatic Cancer

After looking through all of the posts I have done, I realized that I have yet to talk about an event that took place that was close to my heart.  At Waynesburg University in Waynesburg, Pa, an event was started two years ago by the girl's soccer team known as Kick Pancreatic Cancer.  This event was started for Ken Moore, the father of Waynesburg soccer player Catherine Moore.  He was diagnosed with pancreatic cancer, and after Catherine talked to her team about the disease, they decided to do something about it.  The event was planned to take place during a girl's soccer game in October.  The girl's team wore purple jerseys, donated to them by Under Armour and did their best to create publicity for the event.  The team created a Facebook page inviting friends both near and far to come and support the girls and to support the Hirshberg Foundation for Pancreatic Cancer Research, who would be receiving any money the team raised.  The girl's team sold purple t-shirts, Hirshberg Foundation wristbands, and cutout soccer balls that said in memory or in honor of.  They also had different baskets you could buy tickets for with various items inside.  All the money from the concession stand was also donated.

This event may not seem like a huge deal, but I have gone two years in a row because one of my closest friends is on the soccer team and made me aware of the event.  She was very close to my mom and even had the date she died written on the back of her legs during the game.

The most amazing thing about this event, is that the girl's set a goal to raise around $1,000.  In reality, they raised $10,615.  What an awesome achievement.

My Profile Essay

Even though I turned in my profile essay and you can all access it via my blog, I thought that I would give you a little information about my interview and what I learned about my interviewee, as well as things we talked about that didn't make it into my paper.

I interviewed a woman named Annette Fetty-Santilli.  She is a volunteer for PanCAN and works as the West Virginia Affiliate Coordinator.  This organization became a part of her life after her brother passed away from pancreatic cancer.  Since his death three years ago, she has been involved in a number of events that help to raise both money for research as well as awareness for pancreatic cancer.

As someone who understands the loss of a close loved one from this terrible disease, I got to talk to Annette not just about her story, but also about mine.  We talked a lot about the way the person fighting the disease changes and starts to slip away as the disease progresses.  We agreed that watching this happen and being unable to do anything about it was one of the most difficult aspects.

Although I have spoken to friends and family about the loss of my mom, it is very different talking to someone who knows the way you feel and has seen what you have seen.  Not everyone realizes the deteriorating conditions that happen when this disease claims the life of a loved one and the image that is etched in my mind of my mom's final days are forever with me, whether I try to forget them or not.

Annette and I talked a lot about moving on with life after such a loss and the everyday struggles that we both face.

Overall, the experience of this interview was a good one for me.  I made a new friend and learned that everyone struggles with moving on.  Three years later or thirteen years later, life is still different and you just have to adjust to it.

The New and Improved Pancreatic Cancer Research & Education Act (S 362/HR 733)

So I talked before about the Pancreatic Cancer Research and Education Act and how it was denied.  But people are fighting back, and this post is about the new and improved Pancreatic Cancer Research and Education Act.

The House of Representatives 733 is sponsored by Representative Anna G. Eshoo of California.  This act was introduced on 2/16/2011.  The committees involved include the House Energy and Commerce.  The latest major action happened on 2/28/2011 when the act was referred to the House subcommittee.  It's current status is that it is being referred to the Subcommittee on Health.

Here is a list of cosponsors supporting this act:

Rep Ackerman, Gary L. [NY-5] - 3/11/2011
Rep Berkley, Shelley [NV-1] - 3/11/2011
Rep Capuano, Michael E. [MA-8] - 3/11/2011
Rep Cooper, Jim [TN-5] - 3/11/2011
Rep Costa, Jim [CA-20] - 3/11/2011
Rep Cummings, Elijah E. [MD-7] - 3/4/2011
Rep Davis, Susan A. [CA-53] - 3/17/2011
Rep DeGette, Diana [CO-1] - 3/16/2011
Rep Dicks, Norman D. [WA-6] - 3/14/2011
Rep Fitzpatrick, Michael G. [PA-8] - 3/15/2011
Rep Gerlach, Jim [PA-6] - 3/8/2011
Rep Hinchey, Maurice D. [NY-22] - 3/11/2011
Rep Holt, Rush D. [NJ-12] - 2/28/2011
Rep Israel, Steve [NY-2] - 3/11/2011
Rep Lance, Leonard [NJ-7] - 2/16/2011
Rep Latham, Tom [IA-4] - 3/9/2011
Rep Lee, Barbara [CA-9] - 3/11/2011
Rep Lewis, John [GA-5] - 3/14/2011
Rep Lofgren, Zoe [CA-16] - 3/11/2011
Rep Lowey, Nita M. [NY-18] - 3/15/2011
Rep Lynch, Stephen F. [MA-9] - 3/17/2011
Rep Maloney, Carolyn B. [NY-14] - 3/14/2011
Rep McGovern, James P. [MA-3] - 3/17/2011
Rep McKinley, David B. [WV-1] - 3/17/2011
Rep McNerney, Jerry [CA-11] - 3/15/2011
Rep Moore, Gwen [WI-4] - 3/15/2011
Rep Moran, James P. [VA-8] - 2/28/2011
Rep Napolitano, Grace F. [CA-38] - 3/4/2011
Rep Neal, Richard E. [MA-2] - 3/11/2011
Rep Norton, Eleanor Holmes [DC] - 3/15/2011
Rep Pallone, Frank, Jr. [NJ-6] - 3/14/2011
Rep Rangel, Charles B. [NY-15] - 3/14/2011
Rep Reichert, David G. [WA-8] - 2/16/2011
Rep Ross, Mike [AR-4] - 2/28/2011
Rep Sarbanes, John P. [MD-3] - 3/8/2011
Rep Schakowsky, Janice D. [IL-9] - 3/14/2011
Rep Schiff, Adam B. [CA-29] - 3/14/2011
Rep Turner, Michael R. [OH-3] - 3/14/2011
Rep Yarmuth, John A. [KY-3] - 3/9/2011 

The Senate 362 is being sponsored by Senator Sheldon Whitehouse of Rhode Island.  This act was also introduced on 2/16/2011.  The committees involved include Senate Health, Education, Labor and Pensions.  The latest major action took place on 2/16/2011 when the act was referred to the Senate Committee.  The current status is that the act has been read twice and referred to the Committee on Health, Education, Labor and Pension.  The list of cosponsors include the following:

Sen Begich, Mark [AK] - 2/16/2011
Sen Brown, Sherrod [OH] - 2/16/2011
Sen Casey, Robert P., Jr. [PA] - 2/28/2011
Sen Collins, Susan M. [ME] - 2/16/2011
Sen Franken, Al [MN] - 3/15/2011
Sen Inouye, Daniel K. [HI] - 2/16/2011
Sen Johnson, Tim [SD] - 3/7/2011
Sen Kerry, John F. [MA] - 2/16/2011
Sen Lugar, Richard G. [IN] - 2/16/2011
Sen Menendez, Robert [NJ] - 2/28/2011
Sen Merkley, Jeff [OR] - 3/1/2011
Sen Reed, Jack [RI] - 3/14/2011

Relay For Life

So, even though Relay For Life is not specific to pancreatic cancer, it's still very important.  The Relay For Life is hosted by the American Cancer Society.  It is an event that involves walking or running around a track or path, depending on the location, for up to 24 hours in length.  Teams are formed and sponsored in order to raise money, but you don't have to be on a team to participate.  The amazing thing about Relay For Life is that it occurs in many different locations throughout the year.  It is something that I have personally participated in both before my mom was diagnosed and after.  Although I never formed a team, I always made a t-shirt and spent as much of those 24 hours at the track that I could.  There are many things to do at Relay.  There are baskets to buy tickets for, live music, games, and food.  But one thing about Relay that I love the most is the Luminaria.  As the sun sets, light shines on in the form of illuminated bags, each bearing the name of someone who has battled cancer.  Some celebrate survivors, some honor those who lost the fight.  Everyone is given a candle and a silent lap is dedicated to all who have battled cancer.  A display of luminarias is set up and shines in the shape of the word "HOPE."  Hope is a word that is very important to those who have been touched by cancer.  Without hope, you don't have anything.
Click Here for the list of Relay For Life events in the area.
WVU's Relay For Life takes place on April 15, 2011 with registration taking place at 6pm and the WVU Track opening at 7pm.  38 days left.  $17,691.21 raised so far.  What will you do?

Pancreatic Cancer Research & Education Act (S 332/HR 745)

The Pancreatic Cancer Research and Education Act was first introduced to Congress on January 28, 2009.  According to www.govtrack.us, the act hoped to accomplish the following things:

• Amend the Public Health Service Act to require that the Secretary of Health and Human Services establish and implement a Pancreatic Cancer Initiative that would address the high mortality rate associated with pancreatic cancer.
• Require the Secretary to establish the Interdisciplinary Pancreatic Cancer Coordinating Committee that would:
1.  provide advice on overall research objectives and benchmarks; 
2. develop and annually update a strategic plan for pancreatic cancer awareness;
3. conduct evaluations and make recommendations to the Secretary, the Director of the National Institutes of Health (NIH), and the Director of the National Cancer Institute (NCI) regarding the prioritization and award of NIH research grants relating to pancreatic cancer.
• Require that the Secretary develop a primary care provider education program about pancreatic cancer.
• Require that a communication tool kit be developed for patients and their families that focuses on specific pancreatic cancer issues relating to patient choices and care by the Director of NIH and the Director of the Centers for Disease Control and Prevention (CDC).
• Allow grants to be awarded by the Secretary to research institutions for use in developing innovative compounds or technologies for the prevention, early detection, or treatment of those cancers with five-year survival rates of less than 50%.
• Require that pancreatic cancer is the Secretary's focus during the initial five fiscal years of awarding such grants.
• Allow that two additional Specialized Programs of Research Excellence focusing solely on pancreatic cancer be designated by the Secretary.

This Act didn't make it very far, and I think that is a terribly tragic thing.  I don't think I understand what it is Congress needs to hear before they decide that this disease is something they really need to push back against.   But some are fighting hard, as this Act is being reintroduced to Congress.  It may pass, and it may not, but I am sure of one thing:  Those who believe in fighting against this disease are going to push back against Congress, and I think Congress should be scared.