Nobel Laureate Dr. Drew Weissman & Jax Bari Announce New mRNA Celiac Research at Penn's Institute for RNA Innovation
- Jon Bari
- Mar 27
- 8 min read
Updated: Mar 29
"With your help, let’s make eating without fear possible again! Let’s do this!" -- Jax Bari
On a nice Fall afternoon in November 2024, 11-year old Jax Bari left school a little early and missed his 6th grade science class so that he could join Nobel Laureate Dr. Drew Weissman at a special event announcing new mRNA Celiac Disease research at the Institute for RNA Innovation at Penn Medicine.
Dr. Weissman and Jax were joined by special guests including Pennsylvania State Senator Amanda Cappelletti; Dr. Jonathan Epstein, EVP of the University of Pennsylvania for the Health System and Dean of the Perelman School of Medicine; Dr. Kevin Mahoney, CEO of the University of Pennsylvania Health System; and Dr. Jilian Melamed, Research Assistant Professor, University of Pennsylvania.
Jax is no stranger to public speaking having previously spoken about Celiac Disease in front of large groups including at the HHS Food is Medicine Summit and at the National Institutes of Health.
Jax thanked Pennsylvania State Senator Amanda Cappelletti for all of her support and helping to make the mRNA research possible through a generous grant from the Commonwealth of Pennsylvania that received bipartisan and bicameral support from the Pennsylvania General Assembly. Jax also shared his lived experience with Celiac Disease, the "modern" history of Celiac from 1887 to the present, why the FDA should grant his Citizen Petition to require the labeling of Gluten, and why Celiacs need a treatment other than a Gluten Free diet. Jax then introduced Dr. Weissman and explained how excited he was that Dr. Weissman had engaged with him.
After the event, Jax presented his Celiac Journey challenge coins to his research team and explained how it represented food freedom. Jax then sat down with journalists and explained that his mission is to eat without fear.
"Just a crumb of Gluten is like kryptonite to me. If I eat just a crumb of Gluten, just a crumb, I can get very sick, living on the bathroom floor, with vomiting and diarrhea for days. It’s awful!" -- Jax Bari
Nobel Laureate Dr. Drew Weissman, Director, Institute for RNA Innovation, University of Pennsylvania
"Our research into how Celiac Disease could be treated with RNA represents a new era of research. We think RNA can not only rev up immune systems to protect against infectious diseases like COVID, but be tailored to fix autoimmune diseases including celiac disease and prevent allergic reactions."
Jonathan A. Epstein, MD, Executive Vice President of the University of Pennsylvania for the Health System and Dean of the Perelman School of Medicine
"Breakthroughs in the lab are accomplished through the dedication of scientists and from the support of those who care about medical advancements and those affected by disease, such as a remarkable young advocate, Jax Bari, and his family. Funding from many sources, including public and private, drives new scientific innovations to benefit people worldwide."
Dr. Kevin B. Mahoney, Chief Executive Officer of the University of Pennsylvania Health System
"Penn Medicine scientists have shown the many ways RNA-based technology is poised to power new and better treatments. In research, the path from idea to innovation is rarely a straight line, and this funding will help our researchers continue to pursue the answers for questions that could unlock the potential of RNA-based therapeutics for a range of disorders, including celiac disease."
Dr. Jilian Melamed, Research Assistant Professor of Infectious Diseases
"Gluten is not a threat to most people, but as with food allergies, the body's defenses are signaled and an immune response ensues. Ideally, a tolerizing vaccine for celiac would carry information about gluten and teach our immune system to recognize it as safe. Another technique could be using mRNA to somehow induce our immune system to protect or bolster the villi in the small intestine and prevent long-term damage to the digestive system. We're still in early stages of research and trying to better understand the molecular mechanisms at play."
Pennsylvania State Senator Amanda Cappelletti
"Directing state funding to scientific research is one of the most meaningful ways we can use our resources. I know many families across Pennsylvania struggle to live with a Celiac diagnosis and research like this can lead to life changing results. I'm proud to have so many innovators working in our Commonwealth and I look forward to seeing the good work that comes out of this grant award."
Jon Bari, Co-Founder, Celiac Journey
"I first met Dr. Drew Weissman after I heard him speak in 2022 about his work on the COVID vaccine and the potential of the RNA platform to treat peanut allergies and auto-immune diseases. Dr. Weissman's concept of turning one mRNA discovery into a cure for many diseases really intrigued me. I wondered, could this be the breakthrough approach needed for Celiac Disease? I'm grateful that Dr. Weissman was kind enough to meet with us, learn about Jax's story, answer our many questions and listen to our ideas."
Transcript of Jax Bari's Remarks, 11/18/24
Hi. I’m Jax Bari. I'm 11 years old, and I’m in the 6th grade.
Thank you Dr. Weissman, Dr. Epstein, Dr. Mahoney, Senator Cappelletti and the Weissman Lab team!
I’m grateful for this opportunity to share my lived experience and my goal – Eating without fear!
I have Celiac Disease which is a potentially life-threatening food allergy, auto-immune disease and digestive disease.
Just before I started Kindergarten, I was diagnosed with Celiac when I was not growing. As I learned to read, I started with fairy tales and food labels!
Celiac impacts more than 3.3 million Americans, greater than 1.0% of the general population.
Celiac is triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats.
The only treatment for Celiac is a strict Gluten Free diet for life! Yet!
Gluten ingestion for Celiacs can cause more than 200 debilitating symptoms including anemia, cancer, diarrhea & vomiting, heart disease, immunological scarring, intestinal damage, and malnutrition.
44% of those who follow a strict Gluten Free diet still get glutened once a month!
Unlike "traditional" IgE-Mediated food allergies, there’s no rescue medication for Celiacs in the event of accidental ingestion of Gluten, and one cannot outgrow Celiac.
If I eat just a crumb of Gluten, just a crumb, I can get very sick, living on the bathroom floor, with vomiting and diarrhea for days. It’s awful!
Gluten also damages my small intestine. When I was 5 years old, I had Marsh 3 level damage to my small intestine from Gluten. I was anemic. I was told that the doctors only see Marsh 4 level damage when they do an autopsy. It was really bad!
Food insecurity for Celiacs happens every day, regardless of a person’s age or social status, because of various reasons:
1. There’s a constant threat of cross-contact with Gluten,
2. 80% of foods have Gluten in them,
3. the limited availability of Gluten Free food, especially when eating out of home,
4. the high price of Gluten Free food, and
5. Gluten is not required to be labeled on packaged foods in the U.S.! Yet!
There is no break from Celiac ever! Celiac is Every Bite, Every Day! Constant worrying, constant questioning, constant uncertainty, constant high cost! Celiac is a Disease, NOT a Diet!
Since 2006, Wheat has been required to be labeled in the US, but Barley, Rye and Oats have not!
Imagine if you had a Tree Nut allergy and only Almonds and Pistachios were required to be labeled, but not other Tree Nuts such as Walnuts & Pecans. That would create a massive food safety gap that needed to be closed. Fortunately for those with a Tree Nut allergy, that scenario is not the case.
But that similar safety gap does exist with the voluntary labeling of Barley, Rye, and Oats for millions of American Celiacs like me! That’s why I filed a Citizen Petition with the FDA to require the labeling of Gluten on all packaged foods in the US.
This past summer, I was lucky to go to London and Paris. It was so much easier reading food labels in Europe than it is in the U.S.
Even though I don’t speak French, I knew what was safe to eat in France because Gluten is required to be labeled and Europe takes Celiac Disease and Gluten accommodations so much more seriously on packaged foods and prepared meals.
Each day that passes causes Celiacs great risk of ingesting Gluten and getting very sick. This can stop Celiacs from living their best lives possible!
This is a matter of health equality!
So how did we get here? Let's take a moment to step back in time.
The year was 1887:
Grover Cleveland was President
Americans celebrated the 100th Anniversary of the Constitution
The NIH was established, and
Dr. Samuel Gee theorized about Celiac, “if the patient can be cured at all, it must be by means of diet.”
That was 137 years ago!!!
Fast forward to 1952:
Harry Truman was President
Dr. Jonas Salk was poised to develop the Polio vaccine, and
It was first discovered that Gluten was the trigger of Celiac Disease.
That was 72 years ago! Fast forward to 2024, and the only known treatment option for Celiac Disease is a medically required, strict Gluten Free diet, with no exceptions! That’s simply not enough.
For far too long, Celiac has not received it’s fair share of funding since many believe that a Gluten Free diet is all that's been needed to treat Celiac.
I’m here to tell you that's a myth!
Biomedical breakthroughs are only enabled through research, and this requires a transformative commitment with curiosity and adequate funding!
I'm so excited that we raised $375,000 from Pennsylvania to start working with Nobel Laureate Dr. Drew Weissman.
This is Penn Medicine, there’s nothing beyond your capacity!
If COVID has taught us anything, it’s that we can solve large problems if we work together!
Thank you for joining me on my Celiac Journey.
It’s my honor to introduce Dr. Drew Weissman, a world-renowned physician and researcher at Penn Medicine, best known for his contributions to RNA biology and the COVID-19 vaccines.
As the Washington Post reported, Dr. Weissman helped make hugs possible again.
With your help, let’s make eating without fear possible again! Let’s do this!
Full Announcement
Donating to mRNA Celiac Research
If you are interested in financially supporting mRNA Celiac research at Penn Medicine, you can do so online or by US Mail:
Online
Visit: https://giving.apps.upenn.edu/fund?program=MED&fund=605750
Click: "Special Reason"
Enter: "Celiac Disease Research, Honor of Jax Bari, Celiac Journey" in the text box
By Mail
Make check payable to:
Penn Medicine Development
Memo: "mRNA Celiac Disease Research, Honor of Jax Bari, Celiac Journey"
Mail To:
Penn Medicine Development
Attn: Penn Institute for RNA Innovation
3535 Market Street, Suite 750
Philadelphia, PA 19104-3309
Additional Resources: mRNA 101 & Celiac Disease
"Every Bite, Every Day," What one Penn family is doing to raise awareness and research funds for Celiac Disease -- and pursue a cure using mRNA technology pioneered by Drew Weissman. The Pennsylvania Gazette, By Dave Zeitlin
"Scientists at Penn's Institute for RNA Innovation Pursue Vaccines to Stop Celiac Disease," Penn Medicine News, By Alex Gardner
"Pursuing Vaccines to Stop Celiac Disease," By Alex Gardner
"Here's How Penn Researchers are Using mRNA Technology to Treat Cancer, Celiac Disease," By Ashley Wang
Telling Your Parents You Won a Nobel Prize, Dr. Drew Weissman, Penn Medicine
How Do mRNA Vaccines Work?, Penn Medicine Explains
Meet the Nobel Prize Laureates Behind mRNA Science: Katalin Kariko, PhD, and Drew Weissman, MD, PhD
"Meet Drew Weissman" - Laying the Groundwork for COVID-19 Vaccines: Dr. Drew Weissman and mRNA Technology at Penn Medicine