PEDIATRIC PANCREATITIS - LOGAN'S STORY
"Logan was 4-years-old when he was first diagnosed with pancreatitis. It was not until he was five that we learned it was caused by a genetic mutation. Providers explain they can manage his pancreatitis, but there is no prevention or prediction. Logan wakes up, goes through his day and goes to bed with the potential of the extraordinary pain coming at any moment. He faces daily nausea, fatigue, pain and difficulty after meals. As a family we are constantly shuffling in our brains how to manage an inpatient stay when he seems to flare in symptoms."
To read more about Logan's pancreatitis journey, please
CLICK HERE
.
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SECOND GENETICS AND PANCREATITIS WEBINAR
Join Ariel Precision Medicine and The NPF on June 17th at 4 PM Eastern Time for the second webinar on Genetics and Pancreatitis.
Clinical genetic testing can provide insight into the underlying causes of disease and optimized treatment for patients. In this webinar, we will discuss the trade-offs, and some of the terminology and content you may find in a clinical genetic report. To learn more and to register,
CLICK HERE.
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LEARNING HOW TO BE YOUR OWN ADVOCATE - MELINDA'S STORY
"I was pretty frustrated that I was not provided with more information when given a diagnosis of
having a chronic condition from my doctor," said NPF AZ Chapter Chair, Melinda
Mulholland-Frei.
"I
completed my own online research and thankfully stumbled upon the NPF. It was a relief to find an agency devoted to nothing but the pancreas. The NPF has been a huge source of information and support and helped me want to create the AZ Chapter, as I know I am not the only one in AZ dealing with pancreas issues."
To read Melinda's about pancreatitis journey, please
CLICK HERE
. We hope through this story, patients/caregivers will remember to arm themselves with education and be their own advocate to make the right decision.
For pancreas disease resources, please
CLICK HERE
.
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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. )
- Genetics and Pancreatitis Webinar with Ariel Precision Medicine | June 17, 2020
- 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 National Chapter Manager, Patrick Salami at psalami@pancreasfoundation.org.
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CHAPTER & NPF EVENTS
- 15th Annual Fellows Symposium | October 9-11, 2020
- Marine Corps Marathon and 10K | Washington, DC | October 25, 2020
- Party for a Cure NY | November 5, 2020*
- Party for a Cure Boston | November 12, 2020*
*Save the date! More details to follow.
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PARTICIPATE IN THE POST-PFDD MEETING SURVEY
If you attended the PFDD meeting whether in-person or via webcast, or couldn't make it, please take a moment to complete the post-meeting survey to a
dd to the Voice of the Patient Report that will be sent to the FDA. Let your voice be heard with just six short questions. To complete the survey, please
CLICK HERE
.
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CHAPTER CHAIR CELEBRATES ONE-YEAR TPIAT-VERSARY WITH 13.1 MILES
NPF South Dakota Chapter Chair, Karen Frankenfeld signed up for a half-marathon on May 3rd to commemorate her one year anniversary of her
total pancreatectomy with
islet autotransplantation (
TPIAT
) surgery.
Due to COVID-19 the half-marathon was canceled, but that didn't stop Karen from running. On May 3rd, she completed a solo run through
Spearfish Canyon and raised over $1,600 for the South Dakota Chapter.
"
I was unable to exercise or participate in many of the activities I enjoyed. I have felt motivated to inspire hope to myself and all others that have been affected by the disorders and dysfunctions of the pancreas. I am so fortunate and grateful to be able to run and enjoy life again," said Karen. To continue to donate to Karen's TPIAT-versary run, please
CLICK HERE
.
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COLOR IT PURPLE COMPETITION IS RETURNING THIS JULY!
We're doing all we can to minimize the impact of COVID-19 and the lockdown, on the things we do. So we're looking ahead to July 1st when
Color It Purple
kicks off once again.
We want your input in planning for this year. Tell us how we can make it another great one.
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