News from Mission: Cure

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.

 

Download (PDF, 1.38MB)

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.

Over the course of 20 interviews, we listened to stories of excruciating pain, anxiety, and hopelessness as individuals and their families grappled with the medical system in search of a diagnosis or even just sufficient care. These conversations deepened our understanding of the immense impact of pancreatitis on the social, emotional, mental, and financial well-being of individuals and families –  challenges that are rarely discussed while managing the physiological aspects of the condition. And we walked away from these conversations with a strong sense of urgency to do all that we could to ensure that patients battling pancreatitis could receive the holistic, compassionate, patient-centered care necessary to improve their well-being and lead resilient lives.

This report highlights the experience of patients and caregivers through their own words, identifies gaps in current approaches to care, and weaves together concrete ideas shared by patients, caregivers, and providers to improve patient outcomes and quality of life.

Inspired by these conversations, the team at Mission: Cure has identified concrete next steps to create a new patient-centered care model in which pancreatitis patients receive compassionate and holistic care that improves all aspects of their well-being and quality of life. We hope that the stories and themes noted in the report will inspire you and spark an actionable dialogue with providers, payers, and other stakeholders to drive measurable improvement in patient outcomes and experience.

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.

Moments of Hope Photo/Video Contest

By News

Mission: Cure Moments of Hope Photo/Video Contest

We’re very excited to release more details soon about our virtual Moments of Hope celebration for a cure. To make the evening even more special, we need your help! Pictures are worth a thousand words, and we want to be able to tell a story about pancreatitis and hope using your photos and home videos. We want to see your best photos and videos so we can show you off to all our supporters.

Contest Guidelines

Submit your photos and videos — however many you want! — that answer the following question(s):

  • Who has given you hope during your pancreatitis journey?
  • How has your life changed since you or a loved one were diagnosed with pancreatitis?
  • What changes would you like to see made in pancreatitis care within the next 5-10 years?
  • What is one thing that gives you hope, or one thing that helps you stay hopeful?

Please be as creative with your submissions as you’d like. All entries must be original work. The entries will be judged by Mission: Cure based on the following criteria: composition, quality, and theme fit. Submissions will be highlighted on our website, social media, and during our Moments of Hope celebration on Thursday, October 29th. By entering the contest, entrants agree that photos and videos submitted can be used by Mission: Cure for advertising purposes.

Submission Deadline: October 25th

Examples of Photos/Videos We Love

We’re excited to see your submissions! The winner of the photo contest will win a $100 grand prize! 

Additionally, patients are able to waive the cost of the Virtual Event ticket by submitting a photo or video. If you have any questions or concerns, please email us at info@mission-cure.org and we will be happy to help.

Now Hiring: Volunteer Development Intern

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 medical research & development focused on patient outcomes. Such innovation in curing disease is even more needed in the post-COVID-19 world.

 

Job Description

Mission: Cure is seeking committed, impact-driven internship candidates interested in gaining cross-cutting nonprofit development experience. As a young non-profit organization, Mission: Cure provides the unique opportunity for a motivated individual to gain insight into how small non-profits grow and raise capital for exciting and impactful projects. The intern(s) will work closely with the Program Coordinator and organization staff to create, support, and act upon the organization’s development efforts. This internship is an exciting, hands-on opportunity for those excited to pursue a career in nonprofit administration & development with an interest in public health, chronic diseases, genetics, drug development, innovative financing, and/or patient-centered care.

Key Responsibilities

  • Work with the organization staff to draft, edit, and proofread grant proposals
  • Assist Mission: Cure staff with managing corporate sponsors and the logistics of upcoming virtual fundraising campaigns
  • Compile data for grant reports and assist with the drafting and preparation of these reports
  • Identify promising grant opportunities using Instrumentl, a grant tracker platform, and additional desk research
  • Collaborate with Mission: Cure staff to develop presentations for potential and current donors
  • Provide additional development and administrative support as needed

Qualifications

  • Strong research and analytical skills
  • Strong oral and written communications skills
  • Strong project management skills, including the ability to work independently, problem-solve, and meet project deadlines
  • Experience with PowerPoint presentations and event planning (a plus if experience is with virtual event planning)
  • Experience or demonstrated interest in non-profit development, grant writing, grant reporting, individual fundraising, or fundraising campaigns
  • Familiarity with fundraising best practices a plus

Hours will range from 15-25 hours per week. Although Mission: Cure is based in New York City, this is a remote volunteer position that does not require relocation.

To apply, submit a copy of your resume and transcript to hiring@mission-cure.org.

Now Hiring: Intern, Research, Communications, and Projects

By News

About Mission: Cure

Mission:Cure is a young, ambitious nonprofit organization. It was founded in 2017 to find effective treatments and, ultimately, a cure for pancreatitis, an extremely painful, degenerative and costly disease. Mission:Cure is pioneering an innovative funding model that creates new incentives for patient outcomes and uses impact investing and public-private partnerships. 

In our first three years, we have made significant progress. Selected accomplishments include: defined a strategy to cure chronic pancreatitis within 10 years with input from key opinion leaders (KOLs); launched our patient education program and built a robust network of engaged patients, and organized and led a patient panel at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) meeting on expediting therapies for pancreatitis. Earlier this year, we were awarded the innovative practices award for Elsevier/Pistoia Alliance Datathon, an international data science competition that generated 300 drug repurposing candidates.

Purpose & Overview of Position

This position will support emerging research, communications initiatives, and strategic projects during a key growth period for the organization. The intern will be able to work on specific projects while also having a role helping to design a patient-centered care model for chronic pancreatitis that combines an understanding of the medical ecosystem and the patient experience. The intern will have frontline exposure to patients, providers, experts and various stakeholders. The intern will report to the Director of Patient-centered Care and Innovation.

Responsibilities

The intern will play a key role in helping to develop a patient-centered care model with a focus on developing a feasible business model, creating curriculum for providers, and supporting external communications. The intern will contribute and support activities including the following: 

  • Support knowledge and research initiatives, including desktop research of care models deployed in the field, patient-reported outcomes, and provider education curriculum ;
  • Support strategic projects on an ad-hoc basis, including engagements with philanthropic organizations, doctors, insurance companies and medical education providers, from business and financial modelling to program development and analysis; 
  • Develop, write, and/or edit engaging copy for targeted audiences, including grant proposals, blogs, articles, case studies and stories, internal research memos and analysis;
  • Support stakeholder relations activities including establishing and maintaining relationships with medical providers and patients, coordinating events, meetings, and updating  internal databases.

Qualifications

The ideal candidate demonstrates the following characteristics: 

  • Interest in healthcare, program development, social entrepreneurship and 
  • Resourcefulness and ability to learn quickly with a positive and constructive attitude 
  • Flexibility and adaptability to seize new opportunities and manage shifting priorities as we respond to shifts in the field
  • The ability to work in a startup environment and work independently while supporting several projects 
  • Strong collaborative abilities with internal colleagues and external colleagues and partners 
  • Excellent organizational, planning and time management skills 
  • The ability to manage details and organize processes without losing sight of the big picture 
  • A self-starter with personal accountability and a commitment to achieving and exceeding goals and objectives 
  • Excellent interpersonal and professional communications skills (verbal and written)

Term & Extension Opportunity

This is a four (4) month contract from September to December 2020. At the end of the Fall term there may be an opportunity to extend this internship position for another four (4) months, until April 2021.

Location & Working Conditions

Due to COVID-19, this is a remote-only position. Operating business hours are 9am to 5pm, Monday to Friday. There may be occasional virtual events that occur outside of normal operating hours.

Compensation

This internship role will be compensated for on an hourly basis, at $18.00 per hour for 40 hours per week.

To Apply

Please send your resume and cover letter to hiring@mission-cure.org. Mission: Cure is committed to creating a diverse and inclusive environment. We provide all qualified applicants with equal opportunity and consideration for employment without regard to race, ethnicity, religion, gender, gender identity or expression, sexual orientation, disability, age, or veteran status.

New Clinical Trial for Chronic Pancreatitis Patients

By News

If you:

  • Have chronic pancreatitis or pancreatic cancer,
  • AND Have been diagnosed with diabetes,
  • Are between the ages of 40 and 85,

you may be elegible to participate in a new research study funded by the National Institutes of Health (NIH). The study seeks to develop a blood test that can separate diabetes caused by pancreatic cancer or chronic pancreatitis from type 2 diabetes. The study is completely voluntary and would be at no cost to you. You will be compensated for your time.

If you are selected to participate, you will be asked to complete a questionnaire and give multiple blood samples over a two hour time period. There are no scheduled return visits.

To read more about the study, you can visit the website www.ClinicalTrials.gov and enter the identifier code: NCT03460769

clinical trials, chronic pancreatitis study, pancreatitis medical trial

Table of Contents

For Information

https://cpdpc.mdanderson.org/

Contact

CDMCSupport@mdanderson.org
Zoom screenshot of the Mission: Cure team

Introducing Mission: Cure’s Summer 2020 Intern Cohort!

By News

This summer, Mission: Cure is excited to welcome nine incredible interns to our team. As our largest summer intern cohort ever, they have been busy in these past few weeks learning about chronic pancreatitis and Mission: Cure’s model and speaking with other individuals in Mission: Cure’s network. Despite not being able to be physically together, this already promises to be an exciting summer of progress, collaboration, and innovation!

Stella Ng

Stella Ng smilingMy name is Stella and I’m a rising sophomore at Brown concentrating in Public Health and East Asian Studies. I am an active member of the Brown Taekwondo club, serving on the E-board. I am also involved in BURP (Brown University Relaxation Project) and in Connect for Health as a desk advocate for the upcoming school year. In my free time, I enjoy watching Korean films and dramas, historical ones set in late Chosŏn Dynasty and the colonial period are a plus! Other things I’m having some fun with are learning Korean and Mandarin and remotely exercising with friends through Zoom. My super power would be eating anything and everything I want without suffering the health consequences.

 

J Adelman

J Adelman smiling

J Adelman is a rising sophomore at Brown University studying Biomedical Engineering. At Brown, J is a percussionist in the Brown Band and a monitor at the Brown Design Workshop, which is a makerspace for engineering projects. J is particularly interested in working in tissue engineering and drug delivery in the future. Mission: Cure’s drug repurposing initiative to cure pancreatitis motivated J to become more educated on the subject and seek to help Mission: Cure achieve their goals this summer. When not working with Mission: Cure J enjoys playing guitar and walking their French Bulldog, Stella. If J could have a superpower, it would be to shape-shift. 

 

Melanie Anaya

Melanie A. smilingMelanie Anaya is a rising senior at Brown University studying Latin American and Caribbean Studies. At Brown she teaches a Citizenship class and works at the Providence Public Library helping with administrative work. She also serves as a translator at the Rhode Island Free Clinic. As a young girl, Mel witnessed the barriers to treatment and competent medical care in her parent’s rural hometowns in Mexico and it became her life goal to work on reducing these kinds of inequalities. Mel believes the work at Mission: Cure is one way she can work toward this goal. In her free time, she loves going jogging, but balances out this healthy behavior with her newfound love of cooking and baking. If Mel had a superpower she would teleport, so she could visit all her loved ones whenever she wanted.

 

Phoebe Gibbons

Phoebe Gibbons and friend graduationPhoebe Gibbons (right) is a rising junior at Boston College studying Political Science and History. At BC she is involved in College Democrats of Boston College and serves as a mentor in their mentorship program FLAME. Phoebe serves on the board of the Election Committee, which organizes and oversees all undergraduate student government elections. During her free time she enjoys following and volunteering for elections, writing, and walking around the reservoir (either at BC or in Central Park). In high school Phoebe ran her class’s community service project and developed their relationship with the organization Midnight Run, which serves the homeless population of New York City. This sparked her interest and passion for community service and is partially what drew her to the Jesuit ideals of Boston College that are grounded in the service of others. Phoebe is eager to help Mission: Cure this summer and work towards achieving their goals of improving the outcomes and quality of life of patients with Pancreatitis and other rare diseases. She is especially drawn to Mission: Cure’s focus on patients and their families. If she could have any superpower, she would want the ability to control time or talk to animals.

 

Kayla Morgan

Kayla Morgan

Kayla Morgan is a rising senior at Brown University studying Public Health. At Brown she is a member of the Brown Youth Project, which works alongside a local organization called Children’s Friend to create lesson plans and games for children in the Providence community several times a month. Since her freshman year she has been involved with the Brown Admissions Office as a tour guide for the university. Outside of classes and extracurriculars, Kayla enjoys staying active with tap dancing and cycling classes. At the age of three, Kayla was diagnosed with Cystic Fibrosis and has extended her personal experience with chronic illness to work passionately alongside Mission: Cure to help individuals with Pancreatitis and chronic pain. If she could have any superpower, Kayla would want the ability to be invisible like Harry Potter and his invisibility cloak. 

 

Akilesh Raman

Akilesh RamanAkilesh Raman is a rising junior studying Applied Mathematics-Economics at Brown University. At Brown he is the Chair of the Brown Undergraduate Finance Board and serves on the leadership council of Applied Math Peer Advising as well as the Brown Finance Club. Akilesh also contributes as a member of the Brown Political Review and International Mentoring Program, in addition to tutoring children in Kindergarten at a local school near Providence. He brings a unique and personal perspective to the Mission: Cure team. Three years ago Akilesh was diagnosed with the chronic condition Ulcerative Colitis and went through a severe bout of acute drug-induced Pancreatitis. He understands personally the pain and despair that Pancreatitis patients go through, having experienced it himself, and is drawn to Mission: Cure’s core principles and ambitious goals. Akilesh hopes to contribute to the Mission: Cure community through the internship program this summer and assist the team in discovering treatments and therapies for Pancreatitis and other rare chronic illnesses. During his free time, he enjoys listening to music and binge watching Netflix. If he could have one superpower, he would want the ability to read minds.

 

Ellie Thomson

Ellie ThomsonMy name is Ellie and I’m a rising junior at Brown concentrating in public health. On campus, I am a member of Saving Mothers and GlobeMed. I also make podcasts for the Brown Political Review. I was inspired by the advocacy and awareness initiatives at Mission: Cure and wanted to learn everything I could about what it is like to work at a nonprofit organization. In my free time, I enjoy trying new fitness classes, spending time with friends, and discovering new music. My super power would definitely be teleportation.

 

Melanie Morales

Melanie M. smilingMy name is Melanie Morales Aquino and I’m a rising sophomore at Brown. I’m concentrating in Health and Human Biology and on the pre-med track. I am on the e-board for Save a Child’s Heart and Movimiento Estudiantil Chicano de Aztlán (MEChA). I am also a Bonner Community Fellow and am partnered with WTL Health Clinic as a patient services specialist. For fun, I am part of the Salsa club. During my free time, I like to play guitar and go out with friends. My superpower would be the ability to fly. I look forward to working with Mission: Cure because I value how the needs of patients are prioritized and they’re working diligently to find a cure for pancreatitis within 10 years from when it was founded.

 

Alex Leake

Alex Leake smilingMy name is Alex Leake and I’m a rising junior at Brown studying Political Science. At Brown, I spend a lot of my time outside class on the Mock Trial team as well as Camp Kesem. I was inspired to work for Mission: Cure because I know that when we find a cure, thousands of lives will improve dramatically and countless others that will be diagnosed in the future can have peace in knowing there is a cure. In my free time, I love watching baking shows and attempting the recipes myself. If I could have any superpower, I would want to time travel.
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