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News from Mission: Cure

FREE WEBINAR: Genetics and Medication: How Your Genes Affect the Medications You Take

By Genetics, News, Webinars, Webinars: Genetics

Genetics and Medication

How Your Genes Affect the Medications You Take

Please register for Mission: Cure’s next webinar
Wednesday, June 23, 2021
2:00 p.m. EST 

Have you ever wondered why some medications don’t always work as well as they should? One of the reasons may be your genetics.

In this webinar, you will learn about how your genes can influence how your body responds to medications. This growing field, called ‘pharmacogenomics’, can help your medical care providers make more informed decisions about how to safely prescribe medications tailored to your specific genetic variations.

Learn about:

  • Reasons why medications don’t always work as well as they should
  • How your genes can affect the way your body responds to certain medications
  • How pharmacogenomics testing can help
  • What to ask your healthcare provider about pharmacogenomics testing

Solomon Adams, PharmD, PhD

Director of Bioinformatics and Genome Technologies, Ariel Precision Medicine

Introducing Mission: Cure’s 2021 Summer Intern Cohort

By News

We are thrilled to introduce this year’s summer intern cohort. The interns hail from a wide variety of institutions, cities, and professional and academic backgrounds. This year’s interns will work on a number of projects including drug repurposing, communications, nonprofit operations, grant management, and patient-centered care models.

Mariel Priven is a rising junior at Tufts University majoring in Community Health and pursuing minors in Economics and Latin American Studies. Mariel is passionate about health equity, journalism, and learning languages. She joined Mission: Cure to contribute to its goals of developing effective patient-centered care and improving the lives of those with pancreatitis.


Emmanuel Oshodi is a student at the University of Rochester, where he majors in Microbiology and minors in Psychology. Currently residing in New York, Emmanuel joined Mission: Cure as an intern to help bring more attention to chronic pancreatitis through research. He is passionate about equality in patient care and clinical trials as he strives to ensure all patients receive appropriate care regardless of their background.


Julia Anne Chan is a rising second-year graduate student at UC Berkeley’s School of Public Health. Her concentration is in Health Policy and Management. She obtained her undergraduate degree from UCLA with a B.A. in English Literature. She was working at The Arthur Ashe Student Health and Wellness Center at UCLA for a little over 7 years before switching gears to pursue her graduate degree. Her background includes project management, insurance and healthcare administration. She is passionate about health equity, affordability and patient-centered care models. Julia is eager and excited to work with Mission: Cure this summer and looks forward to what this experience may bring.


Alexander Kim is a rising senior Communications and Media major at the University of Michigan. Alex is particularly interested in utilizing the photographic medium with graphic design in bettering communication and information translation between organizations and mass audiences in the hope of more ethical and inclusive advertising. When not at work, Alex enjoys going to jazz clubs and playing the acoustic guitar.


Nathalie Rataj has been a communications intern at Mission: Cure since spring 2021, and will continue working alongside the Communications Coordinator during the summer. She holds a Bachelor of Cultural and Social Anthropology from the University of Vienna and is currently pursuing a Master in International Relations at Central European University in Vienna, Austria.

 


Leo Caronchi is a current 10th grader at Naples High School and will be moving up to 11th grade next year. He is interested in computer science and engineering. Leo joined Mission Cure because he wants to learn more about pancreatitis and prepare himself for the future.

May 2021 Newsletter

By News
Chronic pancreatitis patient Ashlynn Nieve (18) shares her story with this terrible disease. She talks about how long she had to wait for her diagnosis, how her chronic pain often kept her from attending school, and how she coped with prejudice and stigma without losing hope.

Read More

Dosing Pancreatic Enzymes for Adults

By Exocrine Pancreatic Insufficiency, News, Patient Resources

Correct dosing of pancreatic enzymes is a big challenge for adults who suffer from EPI. We’ve heard from patients that once they receive they are told they have EPI, they are not guided or walked through what this means for them going forward. When are they supposed to take their pills? How do they know if they’re on the right dose?

In light of this, we’ve put together a video with Dr. Steven Freedman, a leading expert in pancreas disease and cystic fibrosis in adults. This short, 5-minute guide will answer all the aforementioned questions and more. We hope that, after watching this video, patients walk away with a better understanding of exocrine pancreatic insufficiency and pancreatic enzyme replacement therapy (PERT). We’ve also included a summary of the video so you can follow along as Dr. Freedman discusses the dosing of pancreatic enzymes.


What Dose Should You Be On?

To answer this question, there are two questions that you must consider first.

(1) Do I have mild, moderate, or severe EPI? This is based on time length of disease, pancreatitis vs CF, history of pancreatic surgery, fecal elastase, symptoms including oily diarrhea and weight loss

(2) Size of the meal and amount of fat: Low fat vs high fat high calorie diets

Once you’ve considered the degree of EPI and size of the meal and fat content, you can group yourself into one of three categories:

  • 2-3 25,000 lipase unit capsules (mild)
  • 4-6 25,000 lipase unit capsules (moderate)
  • 7-9 25,000 lipase unit capsules (severe)

Timing of Doses

Consider the following:

  • How long it takes to eat a meal
    • Within 20 min (all with the 1st bite)
    • 20-40 min (1/2 at the beginning, ½ at the end)
    • More than 40 min (1/3 beginning, 1/3 middle, 1/3 at the end)
  • Issues with stomach (gastric) emptying

Dosing Pancreatic Enzymes Correctly

How do you know if you are still on the right dose? The following symptoms might indicate that you are not on the correct enzyme dose:

    1. Oily diarrhea (sticks to the toilet bowl)
    2. Continued weight loss
    3. Other GI symptoms although these can be non-specific
      • Bloating and gas
      • Abdominal pain and distention
pancreatitis diagnosis webinar

Watch our Webinar on Pancreatitis Diagnosis: Living With Pancreatitis

By News, Patient Resources, Symptoms of Pancreatitis, Webinars

Living with Pancreatitis: Navigating Your Diagnosis

On Mission:Cure’s March 10th, 2021 webinar,  Interventional Gastroenterologist and Endosonographer Dr Eli Penn of Atrium-Navicent Health System discussed best practices for patients who are searching for an accurate diagnosis that explains their gastrointestinal symptoms. Melissa Mutz, a wife, mother, and chronic pancreatitis survivor, shares her story and walks us through how to achieve an effective doctor-patient relationship. You can now view this webinar online to learn about:

  • Pancreatitis diagnosis: how do doctors know whether your pancreas is inflamed? Which tests can you ask for?

  • Causes of pancreatic inflammation. (Hint: it’s not alcohol consumption!)

Our Webinar Speakers: 

living with pancreatitis

D. Eli Penn, MD has been practicing for nearly a decade and trained at the Medical University of South Carolina and the University of Florida. He has a reputation for dedication to his patients and has expertise in the endoscopic management of GERD, chronic pancreatitis, gastroparesis, and management of inflammatory bowel disease.

 

living with pancreatitis

Melissa Mutz is married to her husband, Michael and loves being a stay at home mom to her two children, Luke (3) and Ella Grace (4 months). She has suffered from hereditary pancreatitis for 20+ years and most recently had the TPIAT operation at MUSC performed by Dr Katherine Morgan on October 31,2019. She is under the expert care of Dr Eli Penn and is currently pain free from the disease.

Click here to download the patient toolkit.

Download (PDF, 141KB)

Click here to download the webinar slides

Download (PPTX, 148.99MB)

Patient Advocacy Resources

By News, Patient Resources

Air Charity Network

Air Charity Network provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Air Charity Network serves all 50 states and its volunteer pilots utilize their own aircraft, fuel and time to provide free air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation.

More Information

Patient Advocate Foundation

Patient Advocate Foundation is a non-profit charity that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctor.

More Information

Mercy Medical Angels

Mercy Medical Angels provides free transportation to medical care for patients diagnosed with life-threatening diseases or serious health issues.  On the ground with gas cards, bus and train tickets and in the air with trips flown by volunteer pilots and the commercial airlines Mercy Medical Angels ensures that no one in need is denied medical care because they don’t have transportation.

More Information

Now Hiring: Summer 2021 Volunteer Communications Internship

By News

About Mission: Cure

Mission: Cure was founded in 2017 to find effective treatments and, ultimately, a cure for pancreatitis, an extremely painful, degenerative and costly disease. Led by Megan Golden, a leader in innovative, outcome-based financing such as “Social Impact Bonds,” and Linda Martin, a veteran technology entrepreneur, Mission: Cure is pioneering a new funding model that creates new incentives for patient outcomes. Innovation in curing disease is even more needed in the post-COVID-19 world.

Job Description

Position Summary

This internship is an exciting opportunity for anyone interested in applying communications skills and strategies to the world of public health, healthcare, and curing disease. As a young nonprofit organization, Mission: Cure offers a unique opportunity to gain insight on nonprofit development, growth, and operational functions. The intern(s) will work closely with the Communications and Programs Coordinator to develop, enhance, and put into practice communications and outreach strategies. Mission: Cure seeks hard workers and creative thinkers interested in healthcare policy, disease curing, communications, marketing, graphic design, and data analytics. While the intern(s) will be working alongside the Communications and Programs Coordinator, we offer a variety of projects for those interested in genetics, financing, and patient care models. Read More

Now Hiring: Summer 2021 Volunteer Internship

By News

About Mission: Cure

Mission: Cure was founded in 2017 to find effective treatments and, ultimately, a cure for pancreatitis– an extremely painful, degenerative and costly disease. Led by Megan Golden, a leader in innovative, outcome-based financing such as “Social Impact Bonds,” and Linda Martin, a veteran technology entrepreneur, Mission: Cure is pioneering a new funding model that creates new incentives for patient outcomes. Innovation in curing disease is even more needed in the post-COVID-19 world.

Job Description

Position Summary

Mission: Cure seeks student interns to help with this important initiative. We are looking for hard workers and creative thinkers interested in curing disease, nonprofit management, improving healthcare, and innovative financing of social ventures.

Each intern will be responsible for one significant product for the organization and will also contribute to overall operations and strategy. Mission: Cure interns will participate in a program where they will learn from leaders in health innovation and innovative finance.

Read More

Discovering and advancing the world’s first treatments for chronic pancreatitis with Healx

By News

We are elated to announce that Healx, an AI-powered technology company that shares our passion for patient-centered care, has chosen to team up with Mission: Cure to help find a cure for chronic pancreatitis! Mission: Cure was chosen from among many rare disease organizations to be part of Healx’s Rare Treatment Accelerator Program (RTA) with the aim of starting a clinical trial and eventually develop a treatment for pancreatitis.

Launched in October 2019, Healx’s Rare Treatment Accelerator program uses artificial intelligence, drug development, and clinical trial expertise to evaluate, enhance, and accelerate repurposed drugs to treat rare diseases. Healx will devote significant financial resources to the effort, with the aim of starting a clinical trial for a chronic pancreatitis therapy within 12 months. Mission: Cure will provide insights into patient needs and connections to pancreatitis experts.

This innovative partnership will bring chronic pancreatitis patients closer to a treatment for this terrible disease. We are excited to move the needle forward for pancreatitis patients with the help of Healx.

Recognising the all-too-common lack of financial investment and clinical expertise needed to translate repurposed drugs from research to reality, Healx will use its AI, drug development and clinical expertise, as well as significant financial resources, to evaluate, enhance and accelerate the repurposed drugs, with the aim of starting a clinical trial within 6-12 months.

Healx Press Release

Join Our Newsletter to Receive Updates on the Rare Treatment Accelerator

About Healx

Healx Team

Healx was founded in 2014 in Cambridge, UK, by Dr Tim Guilliams, a Biochemical Engineer and Tech Entrepreneur, and Dr David Brown, co-inventor of Viagra and former Global Head of Drug Discovery at Roche.

Healx is an AI-powered, patient-inspired technology company, accelerating the discovery and development of rare disease treatments at scale. There are 7,000 known rare diseases that affect 400 million people across the globe but only 5% of those conditions have approved treatments. Healx’s mission is to identify and progress novel therapies for the 95% of rare diseases without approved treatment. To do this, Healx combines AI technology with drug discovery expertise and patient insight to identify existing drugs that may be repurposed and combined to treat rare diseases.

About Mission: Cure

Mission: Cure is a nonprofit organization that aims to dramatically improve the health and well-being of people suffering from chronic and recurrent acute pancreatitis within 10 years, demonstrating a new model for curing disease. Mission: Cure partners with patients and their families, researchers, clinicians, pharmaceutical companies, and other stakeholders to discover life-altering therapies—including repurposed drugs—and bring them to patients. To support efficient therapy development and more effective care pathways, Mission: Cure works with health systems and payers to pilot innovative funding models that incentivize patient outcomes.

Volunteers Needed for Pancreatitis Research Study

By Clinical Trials, News

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 Qualification”, or call (919) 590-8108.

 

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