THE NPF CENTERS PROGRAM IS REVAMPING |
The National Pancreas Foundation established an NPF Centers Program in 2015 to help patients and caregivers of patients with pancreatitis or pancreatic cancer to identify hospitals that could provide state of the art care. This initial program was quite successful and continues to help patients find access to excellent clinical care with over a 100 centers throughout the nation. We are committed to continuing this program, and in working to improve the process so that it becomes more useful, reliable, and informative for patients and their families. We are currently revamping the process and metrics for NPF Pancreatitis Centers (for both pediatric and adult pancreatitis), and will soon be releasing these new criteria. Work on the NPF Pancreatic Cancer Centers is also ongoing, so look for those new announcements in the near future. To learn more about NPF Centers click HERE.
Chris E. Forsmark, MD, NPF Board Member, NPF Center Committee Chair
University of Florida
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PEDIATRIC PANCREATITIS SCHOOL TOOLKIT |
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School creates many unique challenges for a pediatric pancreatitis patient. This toolkit aims to provide parents, school administrators, and teachers access to helpful information and suggestions to navigate the daily difficulties and obstacles pediatric pancreatitis patients experience while attending school. The information is helpful to anyone who takes care of a child with pancreatitis including after-school caregivers, camp counselors, and day-care personnel.
Click HERE to access the toolkit.
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Communication with your child's teacher is of the utmost importance. Schedule a meeting with the teacher at the very beginning of school and give them information about pancreatitis.
Knowledge is power. Educate teachers on what pancreatitis is and how it affects your child. Send them the links to the NPF toolkit. Make it easy for them to get information on this disease. Warn them that your child may have days the pain is so intense they cannot work, but let them know you will do your part to help your child complete the assignments and learn the content. Talk to the counselor or administrator about an education plan (504 or IEP, depending on the modification necessity) for your child. Health concerns should be given consideration for school success.
Your child will adopt your feelings, attitude, and perceptions. We always held our child to the highest standard, even with a painful disease that took her out of school for a few days. We expected her to make up the work, learn the content, and work hard to continue with her classmates. Her teachers were amazing to work with us, but I believe it is because we pushed her to excel and make the most of the "feeling good" days. We taught her that although it was unfair that she had pancreatitis, circumstances in life would also be unfair. This was a safe way for her to learn how to deal with the "unfair"ness of circumstances, with our support and the collaboration of the school staff. Occasionally, gift the office staff and your child's teacher with tokens of appreciation. They will be the ones who care for your sick child when you can't immediately leave that meeting at work.
Jenny Jamison
Caregiver
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The National Pancreas Foundation toolkit on pediatric pancreatitis provides essential information which enables parents, teachers, and school administrators to work together to ensure that a child’s needs are being met when he or she is suffering from pancreatitis. The toolkit helps prepare the school staff for the child’s needs when a pancreatic flare occurs at school. It also provides the school administration with information necessary to understand the symptoms the child suffers, especially noting that flares can occur without notice and that treatment may require hospitalization.
It is so important that school officials understand that when a child with pancreatitis says he or she has a stomachache, its probably not just a stomachache- it is the beginning of a pancreatic flare. Communication about a child’s health condition between parents and school administrators is essential for the child’s well-being.
When our children return to school, teachers and school staff will need to be cognizant of issues a child with pancreatitis will face. Care should be given to accommodations made for the child. Some of the most important accommodations recognized in the NPF toolkit.
Most importantly, at this time, communication and cooperation between parents, teachers, and school administrators are essential to ensure that a child with pancreatitis receives the care needed, is able to participate in school activities, and receives the benefits of being with his or her classmates.
Jane Macke
Louisiana Chapter Chair & Caregiver
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DRAW YOUR PANCREAS COMPETITION! |
Those under 18 years of age are encouraged to submit original and creative pancreas works of art. One winner will be selected and featured in the September newsletter.
Please submit all entries, including a short bio, photograph and your connection to pancreas disease by September 8th to [email protected], with the subject line DRAW YOUR PANCREAS
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ALEXIS’S STORY
Alexis R., 16, from Pennsylvania, was diagnosed with pancreatitis when she was 15-years old. Prior to pancreatitis, she was a normal teenager who went out with friends and was full of energy. Her new normal with pancreatitis looks a little different, and she is adjusting. Pancreatitis takes a toll on a person, physically, emotionally, and mentally. She shares her pancreatitis journey to help other kids and teens not feel alone and has created a private Instagram account for teens with chronic pancreatitis.
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SELF REFLECTION
One thing pancreatitis holds me back from is dancing. I have danced for seven years but had to give it up two years ago when I got diagnosed. In 2018, after my first three attacks, I was doing better and wasn’t in any pain. So, I got back on the dance floor and suddenly pain hit again. Dancing started to exhaust my body way more than it should have, and I missed out on everything my freshman and sophomore year competing. Pancreatitis will alter and interfere with your life, but you can’t completely let go of the things you loved to do before, because it’s a part of you, just like having pancreatitis is your reality.
In 2019, a year after I had been diagnosed, I started to feel alone. I felt like I had no one to talk to or share my feelings with who truly understood what it’s like to feel the pain. No matter how many times someone said to me “I know it’s painful and it stinks, I’ve read articles and stories”, I knew they weren’t feeling the pain I was in, not being able to move out of the ball I had curled myself up into because then the pain would come back even worse. Also, many people think of adults who drink an excessive amount when they hear pancreatitis but that’s not just what it is.
I didn’t want others to feel alone and created an Instagram account (@pancreaskids) for teens and kids to have a safe environment and support to talk about having chronic pancreatitis. I want to advocate and bring awareness as much as I can to help people better understand this disease.
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INDIANA'S VIRTUAL 10K RUN/PUP STRUT |
Join our virtual 10K run/pup strut anywhere across Indiana. You choose the route, you choose the distance and as long as it adds up to 10K by September 30th you will receive a medal! Lace-up your shoes and fundraise for patients impacted by pancreatic disease. Challenge your friends, family, and co-workers to donate or join your team! Register by August 31st to receive a t-shirt. |
Shop at smile.amazon.com Amazon will donate 0.5% of eligible purchases to the NPF! |
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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.
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PATIENT EDUCATION EVENTS
(Due to COVID-19 precautions, in-person events are being rescheduled; however, the NPF calls on its friends and supporters to explore virtual activities they can undertake to help raise funds for our mission. )
- Senior Health Fair | Fort Wayne IN, September 17, 2020
- Indiana Chapter Education Event | October 2020*
- Michigan Chapter Education Event | Oct. 17th, 2020*
*Save the date! More details to follow.
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SUPPORT GROUPS
(Due to COVID-19 precautions, in-person support groups are put on hold. Please click on the Chapter links for updates)
If you would like to establish a support group in your city, please contact [email protected].
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Amid COVID-19, the 2020 Marine Corps Marathon (MCM) Weekend now only consists of the Marathon. The NPF has decided to transfer it's Charity Partnership for 2020 to 2021 to ensure that everyone will be able to run together (in-person). Team Pancreas is now a virtual team! You can sign up for the marathon ($45) or the 10K ($33). Once you register and sign up, please notify National Program Director, Sokphal Tun at [email protected]. We will add your picture to the 2020 Team Pancreas site. Registrants who raise at least $250 will get a Team Pancreas shirt and pre-race goodie bag along with their MCM swag.
Please visit the MCM page for more information on their virtual events.
*Save the date! More details to follow.
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THANK YOU FOR COLORING IT PURPLE FOR PANCREAS DISEASE!
Thank you for another successful July of Coloring it Purple, the annual challenge to raise awareness and encourage involvement in the fight to find a cure for pancreas disease.
"Be eccentric now. Don't wait for old age to wear purple." - Regina Brett
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