News from Mission: Cure

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

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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.

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Curing Pancreatitis – It’s Time for a New Approach! Webinar Announcement

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Join Mission: Cure on Saturday, Dec. 8th from 12:00 – 12:45 p.m. EST for our next webinar, Curing Pancreatitis—It’s Time for a New Approach! This is the 3rd webinar in Mission: Cure’s patient webinar series. Register here to learn about the key initiatives Mission: Cure is leading in the fight to find a cure for pancreatitis.  During the webinar, our co-directors, Megan Golden and Linda Martin, will share information about Mission: Cure’s:Stop Pancreatitis Sign

  • Strategy to develop disease-altering therapies for chronic and recurrent acute pancreatitis within 10 years
  • Collaboration with genetic scientists and precision-medicine companies to identify genetic drivers of pancreatitis and gene-specific treatments
  • Efforts to test already-approved drugs that show promise for pancreatitis patients
  • New model for financing this research, which brings in “impact investors” who want their money to help people in measurable ways and healthcare payers who are willing to pay for improvements in patient outcomes and not just emergency care

And…

  • How patients can help and participate!

Woman with Abdominal Pain

Mission: Cure is dedicated to finding a cure for pancreatitis and needs your help! Please join us for this webinar to educate yourself and learn how you can get involved. Even if you can’t make it on Saturday, please register so that we can send you the webinar’s recording as soon as it becomes available. Click here to register for this exciting and informative webinar.

Is Pancreatitis in Your Genes?

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On November 13th, Mission: Cure hosted an informational webinar for chronic and recurrent acute pancreatitis patients, their families and clinicians on new genetic discoveries related to this disease. It featured presentations by Dr. David Whitcomb of the University of Pittsburgh Medical Center and Dr. Mark Haupt of Ariel Precision Medicine, two award-winning and innovative leaders, and a engaging Q&A session that allowed patients to have direct contact with these scientists and physicians. Attendees gained unique insights to genetic testing and new genetics discoveries that Mission: Cure and its partners are harnessing to provide promising pathways toward effective treatments.

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Is Pancreatitis in Your Genes? A Webinar on New Genetic Discoveries in Chronic and Recurrent Acute Pancreatitis

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Mission: Cure invites you to attend our Informational Webinar for Chronic and Recurrent Acute Pancreatitis Patients, their Families and Clinicians on November 13, 2018 at 3:00 p.m. EST!

Puzzle pieces between genetics and pancreatic diseases

Join Dr. David Whitcomb of the University of Pittsburgh Medical Center and Dr. Mark Haupt of Ariel Precision Medicine to learn more about the genetics behind most cases of chronic pancreatitis. By listening to and engaging with these award-winning and innovative leaders, attendees will gain unique insights genetic testing and new genetics discoveries that Mission: Cure and its partners are harnessing to provide promising pathways toward effective treatments.

Click Here to Register 

Click Here to Learn More About Our Speakers

Photo of geneticists

This webinar is brought to you by Mission: Cure, an organization that aims to find a cure and improve the quality of life of those affected by chronic pancreatitis by applying innovative financing to medical research and drug development, with support from the Abbvie Foundation.

Join us on October 5th, 2018 for L.A. Party for a Cure!

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Please join us for Mission: Cure’s 2018 Party for a Cure, an L.A.-based gala held at the LUXE Sunset Boulevard Hotel on Friday, October 5, 2018. We are partnering with the National Pancreas Foundation to host a night of generosity and fun to help us achieve our goal of finding a cure for the children and adults suffering from pancreatitis.

Tickets are now available for purchase at http://bit.ly/LAgala2018. In addition, premier giving levels and sponsorship packages are available for recognition in conjunction with the event. More information on these packages is available here, and we urge any interested parties to reach out to our co-directors, Linda Martin at lmartin@mission-cure.org or Megan Golden at mgolden@mission-cure.org.

If you are unable to attend but would like to support Mission: Cure, one-time gifts can also be made through https://www.cureswithinreach.org/donate-to-mission-cure. For more information about the event or on how to be involved with our work driving pancreatic medical discovery and measurably impacting patients’ lives, please email info@mission-cure.org.

N=1 Drug Discovery Pact: Mission: Cure’s New Partnership with Perlara

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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.

For more information, check out Perlara’s recent press release on the exciting project: https://prn.to/2L7FTfC 

If you or a loved one is experiencing pain due to chronic pancreatitis, here is an opportunity to get your voice heard and potentially shape the drug development and regulatory process! On Monday July 9th, 2018 from 10:00am to 4:00pm, FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain. The goal of this meeting is to better understand and incorporate patients’ voice in drug development and evaluation for chronic pain. FDA is interested in hearing about 1) the symptoms of chronic pain that matter most to patients and 2) patients’ perspectives on current approaches to treatment of chronic pain, particularly from those using analgesic medications, other medications, and non-pharmacological interventions or therapies. Due to limited capacity, in-person registration has closed, but registration to attend via webcast is still open. Webcast participants can also provide input through virtual comments. We call upon interested chronic pancreatitis patients to find more information and register at https://bit.ly/2HkylYZ and bring the much-needed voice of chronic pancreatitis patients to the meeting.

Register for the FDA Public Meeting on Chronic Pain!

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To register and see more information regarding the session on chronic pain, please visit: https://bit.ly/2HkylYZ.

On the day of the meeting, registered patients will be able to access the webcast here.

Get your voice heard: If you are unable to making the public meeting, you can still contribute through written comments on the Federal Register Notice for this meeting that will have a public docket open until September 10th, 2018.

Learn more about Patient-Focused Drug Development: This meeting on chronic pain is the 26th disease-area meeting led by the FDA as an important part of its Patient-Focused Drug Development Initiative.

Get involved: Mission: Cure plans to organize an Externally-led Patient-Focused Drug Development Meeting on chronic pancreatitis in the near future. If you are interested in contributing to the planning of this event, please reach out to us at info@mission-cure.org and/or subscribe to our mailing list for future updates.

Mission: Cure News and Updates May 2018

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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.

Pediatric Pancreatitis: The Latest Research

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On April 18th, Mission:Cure and NPF hosted the first webinar in our new pancreatitis webinar series.

International pediatric pancreatitis expert Dr. Aliye Uc of the University of Iowa presented the latest research on pancreatitis in children.
Please click on this link to listen to the webinar.

We hope you’ll join us for future pancreatitis webinars. Please join our mailing list to receive updates, news and events from Mission:Cure.
If you’d like to help Mission: Cure reach our goal to find a cure and more effective treatments for chronic pancreatitis, please DONATE here