News from Mission: Cure

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.

Pancreatitis Pain: The Latest Treatment & Policy Perspectives on Opioids

By News, Pain Management, Webinars, Webinars: Pain Management

Mission: Cure’s most recent webinar is now online:
Pancreatitis Pain: The Latest Medical & Policy Perspectives on Opioids

Watch It Now!

On this webinar, Kate Nicholson, J.D., a civil rights attorney, pain patient advocate, and expert on the so-called opioid or overdose crisis, and Dr. Eva Szigethy, a leading UPMC psychiatrist focused on the management of chronic pain and psychotropic medication management in patients, discuss:

  • Barriers to care for patients who use opioids
  • The opioids policy environment and how patients can use recent policy changes to self-advocate
  • Pain treatment options, including opioids
  • Dealing with anxiety and depression

Headshot of Dr. Szigethy, one of the speakers of the webinarDr. Eva Szigethy
is a professor of psychiatry, medicine and pediatrics at the University of Pittsburgh and the Clinical Director of several integrated behavioral health medical homes in gastoenterology. She is an expert in pain management for chronic pancreatitis as well as inflammatory bowel disease.

 

Kate Nicholson, JD, one of the speakers of the webinar

Kate Nicholson, J.D.,
is a civil rights and disability rights attorney, formerly of the U.S. Department of Justice’s Civil Rights Division, and a nationally-recognized expert on the Americans with Disabilities Act. She is also a person with chronic pain and a pain patient advocate.

Please share this webinar with your care providers and others!

If you missed our last webinars in our series on pancreatic pain, you can find them here:

Psychological Approach Called Pain Self-Management
Medical Approach with a Patient Focus

Pancreatitis Pain: A Medical Approach with a Patient Focus

By News, Patient Resources, Webinars, Webinars: Pain Management, Webinars: Pediatric Pancreatitis

Pancreatitis Pain: A Medical Approach with a Patient Focus

If you or a loved one suffer from chronic pain from pancreatitis, you won’t want to miss the second in Mission: Cure’s series on managing chronic pancreatitis pain. The first webinar in this series discussed a psychological approach called pain self-management. In this webinar, Dr. Steven Freedman discussed a range of medications and medical procedures that have been successful in reducing or managing pain, including:

·      Analgesics
·      Medical Marijuana
·      Uncoated pancreatic enzymes
·      Neuropathic pain treatments
·      Hormones for women
·      Trans-cranial Magnetic Stimulation

Dr. Freedman shared his patient-centered, problem-solving approach to finding solutions that work best for each patient.

What are the causes of pancreatic pain
Dr. Steven D. Freedman

Leading international expert and
Director of the Pancreas Center at Beth Israel Deaconess Medical Center, Chief of the Division of Translational Research, and
Professor of Medicine at Harvard Medical School

Dr. Freedman received his Ph.D. from Yale University School of Medicine followed by the M.D. degree at the University of Connecticut. Dr. Freedman’s expertise is in exocrine pancreatic disease with a particular focus on pancreatitis and cystic fibrosis. He is an internationally recognized leader in these areas with an extensive research program that encompasses both basic science discovery and clinical trials. He has also been a leader in identifying the site in the brain where pancreatic visceral pain is represented, has developed molecular signatures of pain using MR Spectroscopy, and has successfully developed pain therapies using Transcranial Magnetic Stimulation.

Dr. Freedman also presented Mission: Cure’s webinar on pancreatic enzyme replacement therapy that was very well attended and highly rated.

Doctors now have a new tool: international consensus guidelines on treating chronic pancreatitis pain.  You can learn more about the international guidelines here.

Depicting a child suffering from chronic pain on a couch.

Pancreatitis and Chronic Pain: How Can I Manage?

By News, Patient Resources, Webinars, Webinars: Pain Management

On this Mission: Cure webinar, Dr. Tonya Palermo discusses pain self-management techniques

If you or a family member have chronic pain from pancreatitis, Mission: Cure’s webinar with Dr. Tonya Palermo will be helpful as it explores the impact of chronic pain on children, adults and families dealing with pancreatitis. “Chronic Pain and Pancreatitis” was selected as the topic for this webinar in Mission: Cure’s ongoing Patient Education Webinar series based on input from patients and families who identified pain as their number one pancreatitis-related issue.

Depicting a child suffering from chronic pain on a couch.

Our speaker : Dr. Tonya Palermo

University of Washington, Psychologist, Professor of Anesthesiology and Pain Medicine and Associate Director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute

Dr. Palermo shared the latest best practices and innovations in chronic pain assessment and treatment, emphasizing how mind-body skills play an important role in pain management.

This session addressed these questions:

  • What causes chronic pain?
  • Who is at higher risk for chronic pain?
  • What factors influence a person’s pain experience?
  • What is the impact of pain from chronic pancreatitis on children, adults and families?
  • How is chronic pain assessed?
  • What is evidence-based pain treatment?
  • How can mind-body skills help?
  • What should be the role of medical pain therapies?

Dr. Palermo is the author of Managing Your Child’s Chronic Pain, a practical guide to improving quality of life for both children and adults.

Dr. Palermo took attendees’ questions following her presentation. You may submit your questions to Mission: Cure if you watched the webinar and have unanswered questions.

Shows Mission: Cure's team at PancreasFest 2019.

Mission: Cure Update: PancreasFest and Progress

By Clinical Trials, Genetics, News, Patient Stories, Repurposing Drugs

PancreasFest 2019 unveiled promising scientific discoveries and exciting collaboration opportunities, and Mission: Cure was there!

Shows Mission: Cure's team at PancreasFest 2019.

Mission: Cure’s Team at PancreasFest 2019. Big thanks to our amazing interns from Brown University and Amy Jensen who shared her story of living undiagnosed with chronic pancreatitis.

Yes, PancreasFest is the name of a scientific conference held annually in Pittsburgh, PA in July where leading physicians, researchers and patient advocates share new discoveries, discuss results of the latest research and identify best practices for diagnosing and treating pancreatitis, pancreatic cancer and other pancreatic diseases. Two of Mission: Cure’s projects were featured before this highly collaborative and committed group. Read More

Pancreatic Enzyme Replacement Therapy – New Information for Pancreatitis Patients on Treating EPI

By Exocrine Pancreatic Insufficiency, News, Patient Resources, Topics, Webinars, Webinars: Exocrine Pancreatic Insufficiency (EPI) & Pancreatic Enzymes

Busting the Myths about Pancreatic Enzymes for Pancreatitis and EPI

Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presents Busting the Myths about Pancreatic Enzymes for PancreatitisIn this webinar, the fifth in Mission: Cure’s Patient and Family Webinar Series, Dr. Freedman explains:

  • What causes exocrine pancreatic insufficiency (EPI)?
  • How is EPI diagnosed and treated?
  • When should you take PERT and how do you calculate the correct dose?
  • Is PERT helpful in treating the pain of chronic pancreatitis?
  • How does PERT affect patients with diabetes?
  • What new developments are in the pipeline to treat EPI?

Dr. Freedman address these questions and more in this webinar replay as he debunks the myths and solves the mysteries that surround pancreatic insufficiency and pancreatic enzymes, followed by a robust Q & A session with pancreatitis patients who participated in the live webinar.

Potential Chronic Pancreatitis Treatments Identified

By News

On February 28, 2019, Rare Disease Day, an alliance of leading life-science companies, in partnership with Mission: Cure, announced the promising results of a 4-month “datathon” aimed at identifying potential treatments for chronic pancreatitis. Using artificial intelligence and statistical techniques, datathon participants identified 4 existing, approved drugs as repurposing candidates worth testing as possible cures for pancreatitis.

New Pancreatitis Treatment Candidates

The drugs identified are believed to address (target) specific defective genes or processes that lead to pancreatitis.

  • Lacosamide, targeting Cathepsin B
  • Dapsone, targeting the cystic fibrosis transmembrane conductance regulator (CFTR gene)
  • Rolipram, targeting Tumor necrosis factor alpha (TNF-a)
  • Prednisolone, targeting TNF-a

Megan Golden, Mission: Cure’s co-founder and co-director, says, “We look forward to taking the promising candidates to the next step where we hope they will help us find effective treatments for this difficult, rare disease.”

A Unique Public-Private Partnership

Mission: Cure would like to thank its collaborators in the datathon: Elsevier, a data analytics firm that supplied the innovative artificial intelligence framework used in the datathon, the Pistoia Alliance, a nonprofit consortium founded by major life science companies that works to lower barriers to innovation, and Cures Within Reach, a nonprofit leader in research to apply already-approved drugs to treat new diseases.

Academic Partners

Two academic scientists played major roles in the project. Mission: Cure is grateful for their work and hopes to continue to collaborate with them.

Dr. Bruce Aronow is the John Hutton MD Professor of Biomedical Informatics and Co-director of the Computational Medicine Center at Cincinnati Children’s and has developed a computable data model network for chronic pancreatitis that helped determine which drugs were most likely to correct the biological problems causing pancreatitis.

Dr. Aleksandar Poleksic, Professor, University of Northern Iowa, used data science to predict which drug candidates would have the least side effects for patients.

Successful Collaboration Between Patients, Industry and Academia

The success of this project highlights the role that partnering with pharma and life sciences companies and academic institutions can play in bringing us closer to discovering a cure. It is by pooling our expertise that we will achieve our mission and bring new treatments to those who need it the most.

To get updates on Mission: Cure’s efforts to test these drugs and bring those that work to patients, sign up for Mission: Cure’s email list.

Curing Pancreatitis: It’s Time for a New Approach!

By Genetics, News, Patient Resources, Repurposing Drugs, Webinars

On December 8th, Mission: Cure hosted an informational webinar for chronic and recurrent acute pancreatitis patients, their families and clinicians on their new approach to curing pancreatitis. It featured co-directors Megan Golden and Linda Martin, who gave presentations on the gap Mission: Cure is working to address, their innovative financing model, and how patients and families can get involved and help! Attendees gained unique insights to the projects Mission: Cure is spearheading to provide promising pathways toward effective treatments and cures.

Read More

Cookie Policy Privacy Policy