News from Mission: Cure

WEBINAR: Living with Pancreatitis: Navigating Your Diagnosis

By News, Pain Management, Symptoms of Pancreatitis, Webinars
Living with pancreatitis

Living With Pancreatitis

Navigating Your Diagnosis

Register today for Mission: Cure’s next webinar
Wednesday, March 10th, 2020
2:00 p.m. EST 

Join us as GI expert Dr. Eli Penn walks us through the symptoms of pancreatitis doctors look for, the tests patients can ask for to receive an accurate diagnosis, and tools patients can use to be better equipped during their next doctor’s visit.

In addition to having a moderated doctor/patient conversation, Dr. Penn will answer the following questions:

  • How do we know if the pancreas is inflamed?
  • How can we find out what causes the inflammation?
  • Which tests are available and should be performed?

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
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.

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.

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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.

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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.

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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.

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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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Drug Development With a Patient Focus

By News
Patient-focused drug development

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 Mission: Cure, we know firsthand the importance of a care model that puts patients at the forefront. We envision high quality care and support for pancreatitis patients that provides measurable improvement in patient outcomes and experience.

The PFDD meetings are a step in this direction– a commitment on our behalf to put patients’ voices first during every step of the disease process, including drug development. From NPF’s reporting: “Members of the FDA attended the meeting to listen to patients, caretakers, and other patient representatives discuss patients’ experiences with pancreatitis, the disease burden on daily life, available management approaches, and hopes for future treatments. ”

Patient-focused drug development is at the core of Mission: Cure’s innovative approach of getting to cures for pancreatitis and restructuring patient care to put patients first. Read more here about the steps Mission: Cure is taking to develop a patient-centered care model for pancreatitis.

Patient-Centered Care Models for Pancreatitis Patients

By Blog, News
Director of Patient Centered care

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.

Read More

Announcing our Moments of Hope Virtual Party!

By News

Join us for a Night to Remember!

You are cordially invited to our Moments of Hope 2020 virtual Party on October 29th, 2020 at 5pm PT/8pm ET. We hope you’ll join us for an inspiring and interactive evening to celebrate the strength and resiliency of our community and to raise funds to improve the lives of children and adults suffering from pancreatitis.

In a year that seems especially lonely and dreary, we’ve created a virtual space where we can come together to meet new friends (and reconnect with old ones), have some fun and shine a light on the urgent need to find a cure for pancreatitis. Get ready for a live auction, raffles, silly games and more… you will have many opportunities to bid on unique items and experiences, win exciting prizes and raise your paddle…all to support a crucial cause.

In the spirit of creating an accessible and inclusive environment, Moments of Hope 2020 will be free to attend! Please join us as we party together, support each other and raise a glass to hope at a time when we all need it the most.

Register to attend by clicking on the button below.
Get Your Tickets!

Partying is free. Curing pancreatitis isn’t.

 

Your contribution will help find a cure.

Donate

Survey to Assess the Financial Implications of Pancreatitis

By News

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 and financial literacy that patients may find helpful in navigating these experiences.

At the end of the online survey, you will see an invitation to schedule an optional one-on-one conversation to go deeper on some of the questions included in the survey. To schedule this conversation, you will be asked to provide your name and contact information so that a Mission: Cure team member can follow up with you. 

If you are willing to share your experiences with us, please complete this survey by Wednesday, September 23rd, 2020. If you have any questions, please do not hesitate to email us at mystory@mission-cure.org.

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