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.
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.
PancreasFest 2019 unveiled promising scientific discoveries and exciting collaboration opportunities, and Mission: Cure was there!
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
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 Pancreatitis. In 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.
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)
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.
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.
We had so many questions during our webinar on the genetics of pancreatitis, which can be viewed here, that we could not answer them all during the session. We didn’t want to leave questions unanswered, so here are Dr. Mark Haupt and Dr. David Whitcomb‘s answers to the questions we didn’t get to:
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.
Mission: Cure believes that new innovations in medical research are key to achieving our goal of curing chronic pancreatitis. For this reason, we strive to leverage and support advances in genomics and precision medicine and aim to collaborate with forward-thinking and mission-driven organizations. Today, we are excited to announce our partnership with Perlara, a rare disease drug discovery platform company working with highly motivated families, foundations and drug developers. Together, we have formed a n=1 drug discovery PerlQuest pact with the goal of discovering promising compounds for rapid testing in patient-matched organoid models of pancreatitis to get treatments to patients faster.
In Stage One of the PerlQuest, Perlara will engineer ∆F508 and 26 other CFTR disease-causing variants in yeast YOR1 models of CFTR deficiency with Mission: Cure’s support. The project will then involve completing drug repurposing and drug discovery screens with the ∆F508 model and another mutant, e.g., class III or class IV.
In the words of Perlara founder and CEO Ethan Perlstein, PhD., we look forward to scientific firsts for rare disease drug discovery.
Mission: Cure aims to demonstrate a new model for curing disease, leveraging outcome-based financing and impact investing. Our first mission is to find a cure for CHRONIC PANCREATITIS, a painful and disabling disease that affects 150,000 people, including 10,000 children. Our goal is to accelerate the development of promising new treatments and find a cure. But we can’t do it alone.
Pancreatitis in the news
Yes, you read that right! The popular Swedish DJ Avicii died at age 28 in late April after suffering from pancreatitis for several years. All of the major news outlets covered it and “pancreatitis” trended on social media. Unfortunately, some reports made inaccurate statements that pancreatitis is usually caused by alcohol. These generalizations are harmful to patients. Mission: Cure is committed to educating patients, the medical community and others about the latest science and ending the stigma and denial of care that can result from misinformation.
Calling all people living with pancreatitis! Mission: Cure is launching a new awareness and education program. With support from the AbbVie Foundation and in partnership with the National Pancreas Foundation, we will hold a series of webinars where pancreatitis experts will share the latest research and answer patients’ and caregivers’ questions. Also, our blog is coming soon plus we regularly share news and updates on social media. Connect with us!
Our ambitions are BIG but we need your help! We are developing a patient survey to understand patients’ needs, preferences and priorities. Our goal is to help the FDA and other government agencies, medical researchers and healthcare professionals focus on what is important to those affected by pancreatitis. Watch for the survey this Fall. To increase our impact, we urge everyone to participate. Please spread the word to all patients and family members!
An effective treatment for pancreatitis may already be in your drug store… We have identified 36 approved drugs that scientists believe could treat chronic pancreatitis. These include some statins, rapamycin and drugs approved to treat cystic fibrosis. Since these drugs have already been approved for human use, clinical trials can happen quicker and much less expensively than new drugs. We are working with leading scientists and Cures Within Reach to design efficient clinical trials to test the most promising of these drugs. Stay tuned!
Pursuing a “Social Impact Bond” in England The innovative financing model Mission: Cure is planning originated in the United Kingdom in 2010. Called a Social Impact Bond (or SIB, even though it was not really a bond), the first of these was used to fund programs to prevent crime and recidivism. In 2016, Cures Within Reach began exploring whether a SIB could fund repurposing of generic drugs to cure rare diseases in England, with funding from Big Lottery and support from the National Health Service. Cures Within Reach and Mission: Cure are now working with a pro bono social innovation team at Medidata to apply this financing to curing pancreatitis in the UK.
The Nonprofit Finance Fund, which maintains a website for people interested in innovative financing, recently published a blog by co-founder Megan Golden on Mission: Cure’s model. You can read it here: http://www.payforsuccess.org/blog/outcome-based-financing-cure-disease
The Mission: Cure team is growing! Linda Martin joins Mission: Cure as co-director.
Before joining Mission: Cure, I spent over 30 years as a serial entrepreneur, launching and growing companies in the fast-paced mobile telecom industry. It was a challenging and rewarding career and I relish the many friendships that I made. However, my life instantly changed when my daughter was diagnosed with Chronic Pancreatitis. After months of research, I learned that little is understood about this disease and existing treatments are ineffective. I was frustrated but committed to changing the status quo and finding effective treatments for my daughter and everyone living with pancreatitis.
As co-director of Mission: Cure and the mother of a CP patient, I’m obsessed with the urgency to develop improved therapies and find a cure. There is much to do to accelerate research and drug discovery for those living with CP. Together we can raise awareness, drive new discoveries and impact lives. I hope you’ll join us!
Mission: Cure is grateful for the support of the National Pancreas Foundation, Cures Within Reach, the AbbVie Foundation and, especially, the many individuals who have donated to our cause. Every contribution, regardless of size, makes a difference and is an investment in education, research, and advocacy to find a cure for chronic pancreatitis. Mission: Cure depends upon your support to continue this important work.
Megan Golden presented Mission: Cure’s strategy on the Brookings “Impact Bonds for Health” Webinar on December 12th. View the presentation below. For more information please follow this link to the Brookings Website.