THIRD ANNUAL NPF COLOR IT PURPLE CAMPAIGN
|
What Coloring It Purple Means to a Patient
By Amanda Baerwaldt
Pancreas disease is a silent illness. When you’re out running errands, grabbing your coffee, standing in line at the bank - no one would know. Now, some of us aren’t doing so hot and there’s the occasional indicator; such as a feeding tube (which I myself have) or an insulin pump. All in all we move through life on the most rocky of roller coasters and no one would ever know.
All of us have our own story. A pancreas patient will always remember the day they were diagnosed. Many of us fight immense pain, paralyzing nausea, multiple organ function loss - not to mention the emotional demons. We feel disvalued, misunderstood, confused, depressed and hopeless. And yet every day we fight.
So what does the Color it Purple campaign mean to me, as a patient with pancreas disease? Well, we could get into the psychology of how social media campaigns in general are highly successful. Because in our culture we love to fit in to the crowd. There is no easier way to do that than to post an image that makes your stance immediately obvious and to challenge others to do the same. But to me, people coming together in a nation-wide campaign to Color it Purple makes us seen. This gives us a voice. It shows that others are invested in us. With every new participant comes the opportunity for that person to make a change.
The more globally aware people are about our disease, the more power we have to demand better policies, more precise research and access to cutting edge technologies. With these tools physicians can make more mutually agreed upon, evidenced - based decisions on how to manage care. Through research early detection methods could mean better long-term outcomes, increased quality of life and patient satisfaction.
When you inform just ONE person about pancreas disease you make a difference. So think about how much of an impact you are making when you #
npfcoloritpurple
with pride.
|
Get ready and Light It Up Purple for the Pancreas!
The NPF is asking that you turn your porch lights purple for the month of July. To make it easy,
click here
and purchase your bulbs. (Purchase through Amazon Smiles and pick the NPF as the charity of your choice) This is a 6 pack so give it to your family and friends and ask them to participate. Let's shine the light together on pancreas disease!
|
Our CEO, is cooler than your CEO. Matt Alsante Coloring It Purple for pancreas disease awareness!
https://youtu.be/9HFlDKQPcqM
|
|
Education and advocacy are part of the National Pancreas Foundation's (NPF) mission. Please see the list of events that are coming up throughout the year. We hope you are able to join us! For a complete list, please see our
Events Page
.
|
PATIENT EDUCATION EVENTS
- Georgia Chapter Education Event | Atlanta, GA | August, 11, 2019
- Indiana Chapter Education Event | Indianapolis, IN | September 14, 2019
- Illinois Chapter Education Event | Chicago, IL | September 21, 2019
- Iowa Chapter Education Event | Iowa City, IA | October 5, 2019
- Michigan Chapter Education Event | Plymouth, MI | October 19, 2019
- Texas Chapter Education Event | October 26, 2019
*Save the date! More details to follow.
|
SUPPORT GROUPS
If you would like to establish a support group in your city, please contact National Chapter Manager, Patrick Salami at psalami@pancreasfoundation.org.
|
CHAPTER EVENTS
- Earl D. Hoover Memorial Golf Tournament | Carmel, IN | August 3, 2019
- Western PA Courage for a Cure Gala | Pittsburgh, PA | September 13, 2019
- Party for a Cure - New Jersey | Paramus, NJ | September 15, 2019
- Marine Corps Marathon & 10K | Washington, DC | October 27, 2019
- Strike-Out Pancreas Disease Central PA Chapter | Carlisle, PA | November 10, 2019
- Strike-Out Pancreas Disease Indiana Chapter | Noblesville, IN | November 3, 2019
- Party for a Cure - Boston | Boston, MA | November 13, 2019
- Strike-Out Pancreas Disease Minnesota Chapter | November 16, 2019*
*Save the date! More details to follow.
|
Has running a 10K or marathon been on your bucket list? Want a running tour of the Nation's Capital? The NPF has been chosen as a charity partner for the 2019 Marine Corps Marathon/10K in Washington, DC on October 27, 2019.
We are looking for runners to run and raise research dollars for the NPF. To find out more, please
click here
.
|
Join the NPF Georgia Chapter on August 11th to learn about pancreatic cancer from diagnosis, through surgery and long-term recovery. After the education event, there will be an opportunity to attend the Atlanta United FC match v. NYCFC. The team is offering NPF Pancreatic Cancer Education participants an exclusive offer. For more information, please
CLICK HERE
.
|
|
FRIENDS TURN DIAGNOSIS INTO AWARENESS
Growing up, Megan Park and Lauren Smakosz were not only neighbors, but the best of friends. "I think we became friends at age six," said Park who was first introduced to pancreatitis when Smakosz was diagnosed at the age of 8 years-old. "I never knew what pancreatitis was when we were little. I was so young and I just knew Lauren was in pain a lot of the time. Now that I’m older, and know more about it, I realize how much Lauren went through and what she continues to battle. No one her age should have to go through what she’s been dealing with."
Park is a senior at Seneca Valley High School and for her senior project, has organized the "#LaurenStrong 5K Family Fun Run/Walk" on August 11, 2019. This event will benefit the NPF in honor of Smakosz. "It’s difficult when one of your best friends is going through so much and you can’t fix it. I just wanted to do something to show Lauren how inspiring her strength is and how much I appreciate our friendship," said Park.
For Smakosz, this means a lot to her as well, as it will bring awareness a to a rare disease that can be very isolating. "Being diagnosed with pancreatitis was difficult because I didn't know any other kids who were going through what I was going through. Through years of hospital admissions, testing and surgeries, it became more and more difficult to keep up with school work and get back to playing soccer. Megan has always been there for me and taught me how important the power of friendship and feelings of support can inspire you to get through even the darkest days. I'm so grateful to have her as a friend and so proud of her for planning an event to support the National Pancreatic Foundation. She's inspired me all these years to keep fighting, and I'm so happy she can inspire others through awareness and support of funding. "
While the event is just a mere few weeks ago, traction has increased and the event has raised close to $600 already. "The planning for this event has been going well. I’m really excited for the 5k day! It makes me very happy to see so many people supporting Lauren. She’s a very special person and an inspiration to many," said Park. To register or donate to this event, please
CLICK HERE
.
|
|
TWICE THE CAREGIVER - KATHLEEN'S STORY
In 2014, Kathleen Perry's Mother was diagnosed with Stage IA pancreatic cancer arising from an intraductal papillary mucinous neoplasm (IPMN). In 2018, her husband was also diagnosed with IPMN.
"Nothing prepares a caregiver for this. Absolutely nothing in this world could have emotionally prepared me for both my Mom and my husband having the same disease. I steadied myself as I’d done before but felt shocked by it all. That feeling lasted for weeks along with periods of denial, anger and sadness. I told family and friends, but didn’t elaborate. I didn’t talk about it on social media. Containment. Survival mode. The gamut of emotions cycled through me, but I had never expected nor even truly entertained the possibility of cancer."
To read Kathleen's caregiver story and how she managed providing care to her Mother and then her husband, please
CLICK HERE
.
|
|
PUSHING BOUNDARIES - AMANDA'S STORY
In 2017,
Amanda Baerwaldt
was diagnosed with Idiopathic Recurrent Acute Pancreatitis (IRAP). Since then her journey with pancreatitis has not been an easy one as it has taken a toll on her emotionally and physically, leading her to her next major decision of getting approved for a Total Pancreatectomy with Islet Autotransplantation (TPAIT) in September 2019.
She shares her story with pancreatitis, initially blaming herself for this disease and learning to forgive herself in the end. To read more of Amanda's Story, please
CLICK HERE
.
|
|
Coming in August...
WE WILL BE ANNOUNCING MORE NPF CENTERS!
|
|
|
|
|
|
|
