Dear friend,
I just got back from New Delhi, India, where the International Association of Pancreatology invited me to speak to a few hundred pancreas researchers and doctors, and I wanted to share some updates.
💬 Pancreas 2023 Conference
This was the first time that a patient advocacy group had such a prominent role at this international pancreas conference. Dr. Pramod Garg, one of the top pancreatic doctors in India and internationally, chaired my plenary session and even invited a few of his patients to comment.
I shared the stories of my brother Eric and of our new staff member Shruthi to show the urgent need for pancreatitis treatments and better, more coordinated care. I laid out our cure strategy and our patient-centered care model, inviting people working on new therapies to partner with us.
The speech was well received, and we were told that it “created a buzz.” Most importantly, we were able to identify new researchers we could partner with to develop better pancreatitis treatments.
We met our Consulting Patient Education Project Manager, Shruthi Meera Shankar (Left), for the first time in person. As a chronic pancreatitis patient from India, Shruthi added a tremendous amount to our team. (She also introduced us to some delicious South Indian foods!)
⚠️ Acrigen Update
You may be aware of our collaboration with Acrigen Biosciences, a biotech company pioneering the first gene therapy for PRSS1 hereditary pancreatitis. Acrigen demonstrated in the lab that its technology could successfully edit the PRSS1 gene. Unfortunately, while substantial strides had been made to advance this promising new therapy, Acrigen was unable to secure additional funding from the NIH to continue its work. Additionally, the finance environment for biotech firms has been very challenging and Acrigen has not been able to raise the necessary funds to continue its PRSS1 program internally.
We are urgently seeking solutions to ensure that this important work is continued, including working with Acrigen’s founder and CEO to find a collaborator, partner, or funder. Should you have suggestions or contacts that might provide support, please reach out to our Board Chair, Linda Martin (lmartin@mission-cure.org).
🔬 Chan-Zuckerberg Initiative Rare As One Network
Lola and I just spent 4 days with CZI’s science staff and the organizations the foundation funds, including 60 patient-led rare disease organizations. When their children were diagnosed with a rare disease with no cure, the founders of these organizations were told, “There’s nothing we can do–take your daughter home and love her.” And they said: “No–that’s not good enough. I am going to start an organization to find a cure for my child and for all of the other children like them.” Faced with a healthcare system that couldn’t help, they set out to change the system. These are my people! We learned a lot about strategies to cure rare diseases but also came away feeling inspired and supported.
🎉 Register for Moments of Hope 2023
Finally, we're just days away from our Moments of Hope Gala! If you haven't registered yet, please visit our website and secure your FREE spot here: mission-cure.org/moments-of.... This gala is our only fundraising event of the year, and we rely on the funds raised to keep our nonprofit running. It's going to be an inspiring evening, and your presence and support mean the world to us. We can’t wait to see you there!
Gratefully,
Megan Golden
CEO and Co-Founder
