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Sofia Garcia

December 18, 2020

Exceptional Pancreatitis Care Providers

Exceptional Care Award During our 2020 Moments of Hope party, we asked patients to submit the names of care providers that gave them a Moment of Hope during their disease journey. Pancreatitis is a commonly misunderstood disease, even in the medical community. New science has revealed that chronic pancreatitis is not caused by alcoholism, but rather a combination of environmental and genetic factors-- yet the stigma still persists. The lack of understanding of the disease often hinders pancreatitis patients from receiving the best care. (more…)
Sofia Garcia
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December 15, 2020

Mission: Cure Co-Founder Eric Golden Elected Chair of CAPER Board

The Collaborative Alliance for Pancreatic Education and Research (CAPER) Board of Directors is delighted to announce the election of Eric Golden as Chair of the CAPER Board.  Mr. Golden is the Founder and Managing Director of Fluential Partners, LLC, a boutique investment bank.  Previously, he has served in roles ranging from CEO of a startup to General Counsel of several companies.  Mr. Golden is a leading advocate for patients with pancreatic disorders; in addition to his work for CAPER, he is a co-founder of Mission: Cure and a board member of the National Pancreas Foundation. Mr. Golden is expected to…
Sofia Garcia
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December 11, 2020

New Pancreatic Cancer Screening Guidelines: What Pancreatitis Patients Need to Know

Key Takeaways Pancreatic cancer is very rare. But it is also very deadly because by the time it is discovered, it often has already started to spread to other organs. People with pancreatitis and a PRSS1 genetic mutation (hereditary pancreatitis) should be screened every year for pancreatic cancer starting at age 40. Screening involves and MRI and a CT Scan. Annual pancreatic cancer screening is not currently recommended for pancreatitis patients with SPINK1 p. N34S, CFTR, CTRC, CPA1 and CEL genetic mutations unless they have two blood relatives with pancreatic cancer. Stopping smoking, a healthy diet, and exercise can help…
Sofia Garcia
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PERTs for Chronic Pancreatitis
Exocrine Pancreatic InsufficiencyTopics
December 9, 2020

Exocrine Pancreatic Insufficiency and Pancreatic Enzymes

What is Exocrine Pancreatic Insufficiency (EPI)?  EPI --when the pancreas does not secrete enough digestive enzymes-- is common in people with chronic pancreatitis. This is because as the pancreas gets scarred, the part of the pancreas that generates enzymes is destroyed and thus is unable to produce these enzymes that are essential in the digestive process. Leading causes of EPI:  Chronic pancreatitis: 15-30% prevalence Pancreatic restriction/older age: 15-40% prevalence Cystic fibrosis: 80-90% of CF patients All infants up to 6 months of age! What happens if you have Exocrine Pancreatic Insufficiency or EPI? EPI causes 4 main problems: Carbohydrates are…
Sofia Garcia
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Clinical TrialsNews
November 17, 2020

Volunteers Needed for Pancreatitis Research Study

Volunteers Needed Precision Care Network is collecting nasal cells to support research focused on improving medical care for people who have been diagnosed with pancreatitis or are at high risk for developing pancreatitis. Donating nasal cells takes less than five minutes. Eligibility Must be 18 years or older and Have a pancreatitis diagnosis, or Be at high risk of developing pancreatitis Compensation You will receive $25 per collection for each nostril (up to $50.00) for your participation You may have the option to donate saliva Qualification To see if you may qualify, email research@precisioncn.org with the subject like, "Pancreatitis Research…
Sofia Garcia
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November 6, 2020

Drug Development With a Patient Focus

Picture from: National Pancreas Foundation Pancreatitis Externally-Led Patient-Focused Drug Development Meeting Mission: Cure was one of many patient advocacy nonprofit organizations that participated in the development of the very first Voice of the Patient Report, a months-long project led by the National Pancreas Foundation. In March, during the Patient-Focused Drug Development (PFDD) meeting, Co-Founder and pancreatitis patient Eric Golden shared his experience with pancreatitis before members of the United States Food and Drug Administration (FDA). PFDD meetings put patients' experiences at the forefront and give them a voice in the drug development process. Mission: Cure's Belief in Patient-Centered Care At…
Sofia Garcia
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NewsNewsNews
October 15, 2020

Patient-Centered Care Models for Pancreatitis Patients

Avi Khullar, Director of Patient Centered Care What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support? How does this condition change the way that they go about their daily lives? If pancreatic patients could reimagine their ideal care experience, what would that look like? These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis. (more…)
Sofia Garcia
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BlogBlogBlogBlogPatient Stories
October 2, 2020

Seeking Treatment for Chronic Pancreatitis: Laura’s Story

Laura while traveling in Wadi Rum, Jordan Stabbing Pain Leads to Acute Pancreatitis Diagnosis In December 2018, Laura Perry, a 24-year old previously-healthy law student, began experiencing abdominal pain after returning home from a trip to Mexico with her family. While in Mexico, Laura had contracted an infection. Believing that it was nothing serious, her doctor prescribed antibiotics. The antibiotics were unsuccessful in reducing the pain so Laura went to an urgent care in hopes of a more effective treatment. The urgent care doctor incorrectly diagnosed H. Pylori and prescribed more antibiotics. But, Laura’s pain intensified. She describes the pain…
Sofia Garcia
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September 11, 2020

Survey to Assess the Financial Implications of Pancreatitis

Mission: Cure was established in 2017 to improve patient outcomes, find effective treatments and, ultimately, a cure for pancreatitis. Over the last three years, patients have consistently shared their dismal experience and the financial toll of navigating the medical system in search of a diagnosis and/or a treatment plan while suffering with pain, hopelessness, and poor outcomes. We are conducting an anonymous online survey to better understand the financial challenges and barriers that patients face when seeking care for chronic and recurrent acute pancreatitis. We believe that your input will help us  to identify educational resources related to financial advocacy…
Sofia Garcia
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Blog
September 4, 2020

ICD Codes Linking Pancreatitis to Alcohol Harm Patients. Let’s Change Them.

Key Takeaways Currently, ICD Codes for pancreatitis associate the disease with alcohol consumption, which is scientifically inaccurate. Physicians use a system called ICD-10 codes to identify diagnoses and procedures in patient medical records and for insurance reimbursement. Chronic Pancreatitis has been inaccurately thought to be caused by alcohol. This is now known to be inaccurate, but is still reflected in ICD codes. That needs correcting. Inaccurate coding harms patients, causing incorrect diagnosis, delayed treatment, bias and stigma. Mission: Cure has submitted a proposal to the CDC to delete the code for Alcoholic Chronic Pancreatitis and replace it with scientifically relevant…
Sofia Garcia
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