Project Islet Freedom

A movement for faster action on Type 1 diabetes access.

We've Waited Long Enough.

The science isn't what's slow anymore. Government is.

For decades, researchers have worked to bring us closer to life-changing Type 1 diabetes therapies. Today, science is moving faster than ever. Now it's time for the people who can help remove unnecessary barriers to move with the same urgency.

Join thousands of voices calling for faster action on therapies that could change millions of lives.

This isn't about politics. It's about patients.

This tool helps you turn your story into a clear call to action to Robert F. Kennedy Jr., HHS, and your representatives so they support the ISLET Act, act on reclassification, and finally do something that actually matters for people with Type 1 diabetes.

Start Here Why now

Two goals

Fast reclassification

Push Robert F. Kennedy Jr. and HHS to move islet cells from a drug pathway to the organ transplant side now.

Longer route through Congress

Push Congress to move and pass the ISLET Act. This tool pushes for both.

How this works

Step by step.

1. Tell your story.
2. Tell us where you're from.
3. We look up your senators and House member automatically.
4. We turn your story into messages with the policy details that matter.
5. We help you post publicly and give you ready-to-use messages for official contact forms.
6. When you finish, you can share the tool with one more person.

Why this matters

Real progress is finally happening. Now the people with power need to hear from us early and often. Congress needs pressure to move the ISLET Act, and Robert F. Kennedy Jr. and HHS can act now on reclassification.

This isn't about politics

If elected leaders have the ability to help accelerate safe access to life-changing Type 1 diabetes therapies, they deserve to hear directly from the people whose lives are affected every single day.

Phone or computer?

It works on a phone. A computer is usually easier for longer editing and government contact forms. Social posting is often easier from your phone.

What we are pushing

The science is moving. Access is not.

Pass the ISLET ActHHS can act nowReal stories matter

Start with your story. We will help with the rest.

Why now

The science is moving. Access is not.

For years we have heard “5 to 10 years.” This is the first time the momentum feels real. The science is moving. Policy is still in the way. Congress needs to move the ISLET Act, and Robert F. Kennedy Jr. and HHS can act now on reclassification.

If you want the receipts, start with the links below.

Eledon data UChicago trial ISLET Act statement

Step 1 of 6

Your story

Tell us a little about you. We'll use your story to draft messages you can review, edit, skip, and send yourself.

First NameLast NameEmail optional

Want us to find your members of Congress?

Add your full address if you want representative matching. We use it only for lookup and do not place it in your messages.

Street Address

CityState

ZIP

Used only to find your officials. Not shared in your messages. Nothing is sent automatically.

Your Relationship with Type 1 DiabetesWhat's your connection to this, and what do you want people to understand?

Optional: add a little more context

Hope or concern

Tone

Personal and heartfeltClear and directShort and simpleRespectful but urgent

Optional: Project Islet Freedom may save my contact info for campaign follow-up.If you check this, your information may be saved so Project Islet Freedom can follow up about this campaign.

Dave40 yrswith T1D

About Dave

Why I built Project Islet Freedom

I’ve lived with Type 1 diabetes for 40 years. I built this because I’m tired of watching real progress get stuck behind politics and paperwork.

Hey, I'm Dave. I've lived with Type 1 diabetes for 40 years, and I built this because I'm tired of being told to wait while the science moves and the system drags its feet.

I've heard “5 to 10 years” for most of my life. For the first time, some of this progress actually feels real. What frustrates me is that policy can still slow it all down.

Most of us are not lobbyists. We just know what this disease takes. I wanted a simple way for real people to tell their story, aim it at the right people, and be heard without sounding like a canned campaign.

That's what this is. You bring your story. The tool helps turn it into clear messages for Congress, Robert F. Kennedy Jr., and HHS so more real people can push on the ISLET Act and on reclassification at the same time.

Learn more

FAQ and Resources

If you want the background behind the messages, start here.

What are islet cells?

Islet cells are the insulin-producing cells destroyed by Type 1 diabetes. Islet transplantation replaces those cells and may help restore natural insulin production. That is why access to this treatment — and the policies governing it — matters.

What is islet transplantation?

Islet transplantation is a procedure where insulin-producing islet cells are transplanted into a person with Type 1 diabetes. The goal is to help restore insulin production and improve blood sugar control.

Is this a cure?

It is more accurate to call this a potential functional cure pathway. Some people in recent islet transplantation research have achieved insulin independence, but results vary, long-term follow-up matters, and access is still limited.

Why does classification matter?

This is about whether deceased donor islet cells are treated as an organ transplant instead of as a drug or biologic therapy. That choice affects access, cost, availability, and whether transplant centers have a realistic path to offer this care.

What can HHS do?

Robert F. Kennedy Jr. and HHS can act now. The ask is to reclassify deceased donor islet cells from a drug or biologic pathway to the organ transplant side using existing HHS authority.

What can Congress do?

Congress can help move the ISLET Act forward. Right now the push is to get lawmakers to support it, move it out of committee, and stop it from stalling.

Why are you asking people to share their stories?

Policy changes often happen when decision-makers understand the human cost of delay. Real stories from patients, parents, caregivers, clinicians, and supporters can help show why access matters now.

How do stem-cell or manufactured islet cells fit into this?

Project Islet Freedom is not only about donor-derived islets. Donor islet transplantation is showing what may be possible now, while stem-cell-derived, manufactured, encapsulated, and future islet technologies could make this approach more scalable over time. The point is simple: the policy framework needs to keep up with the science.

Why does the NewcelX and Eledon collaboration matter?

NewcelX and Eledon announced a collaboration to pair NewcelX’s stem-cell-derived islet replacement platform with Eledon’s anti-CD40L antibody, tegoprubart. That matters because one piece of the puzzle is replacing insulin-producing cells, and another is protecting those cells from immune rejection. Together, these approaches could help move islet replacement closer to a scalable functional-cure pathway.

Background reading

Eledon Pharmaceuticals — Tegoprubart islet transplantation dataUpdated data from the UChicago investigator-initiated trial reported 100% insulin independence in 10 patients more than four weeks post-transplant, with the 12-patient cohort fully enrolled.UChicago Medicine clinical trial — Tegoprubart / AT-1501 and islet transplantationClinical trial page explaining tegoprubart, also known as AT-1501, and its role in helping protect transplanted islet cells.Dr. Piotr Witkowski / UChicago study pageStudy page for the UChicago islet transplantation trial using tegoprubart as part of a calcineurin-inhibitor-free immunosuppression regimen.NewcelX + Eledon strategic collaborationScience and access resource about NewcelX and Eledon pairing a stem-cell-derived islet replacement platform with tegoprubart immune-protection research.NewcelX — IsletRx for Type 1 DiabetesInformation about NewcelX’s IsletRx program and its work on cell-based approaches for Type 1 diabetes.Breakthrough T1D — Deceased donor islet cell transplantation 101Plain-English overview of deceased donor islet cell transplantation and why it matters for people with Type 1 diabetes.Breakthrough T1D — Statement on islet cell availability and the ISLET ActBreakthrough T1D statement about islet cell availability, access, and the ISLET Act.Breakthrough T1D — Cell therapiesBackground on islet cell therapies and manufactured cell therapy approaches for Type 1 diabetes.Breakthrough T1D — Cell therapies in clinical trialsOverview of Type 1 diabetes cell therapy research moving through clinical trials.Breakthrough T1D UK — Vertex lab-grown islet cell trialsPlain-English resource about Vertex clinical trials using lab-grown islet cells.Reuters — Novo Nordisk and Aspect Biosystems diabetes cell therapy partnershipReporting on a diabetes cell therapy partnership focused on advancing cell-based approaches.Reuters — 3D printed insulin-producing cellsReporting on early research using 3D printed insulin-producing cells for Type 1 diabetes.ClinicalTrials.gov — Islet cell transplant researchClinicalTrials.gov listing describing islet transplantation research and outcomes such as reducing severe low blood sugar and improving blood sugar control.

Latest news

Selected coverage from official government, research, and Type 1 diabetes advocacy sources—focused on islet transplantation, reclassification, and the ISLET Act.

Looking for the newest coverage…