T1D Fund Rift Expands

June 26, 2026

This update is a tale of two letters. One is from Breakthrough T1D’s International Board of Directors, outlining the reasons they took such forceful action to radically change the leadership and operating structure of the T1D Fund. The other is an open letter signed by eight former T1D Fund leaders demanding greater transparency and accountability. The two letters lay out the two sides of this rift. Both letters were widely distributed and redistributed. Copies of both letters are available below.

Overall, this is not good for T1D, and it is deeply unfortunate that it has come to this. The rift pits the world’s largest and most powerful T1D nonprofit against some of the wealthiest and most influential individuals in T1D. It is a sad distraction away from the essential work of finding a T1D cure. But we are where we are.
 

Why Is This Important for the Regular Donor?

This is important for the average supporter of Breakthrough T1D, even though it seems like a contest between giants. First, this is a real distraction of Breakthrough T1D leaders away from the essential work of developing a cure. Second, it raises a question about how donors are treated. If Breakthrough T1D has a rift with some of its most long-term, stalwart, and deep-pocketed donors due to perceived transparency and a lack of straightforwardness, what does that mean for the average donor?
 

A Key Open and Festering Question: Amendments #6 & #9

One main issue that continues to fuel this discussion is Breakthrough T1D’s refusal to make the full text of the LLC agreement public, or at a minimum, the exact text of what has changed. Critics contend that once someone reviews the specific, complete language changes in amendments #6 and #9, side by side, it will be clear that the T1D Fund has lost its operational independence, which may have major implications for T1D Fund donors and partner investors.

Potential Concerns for T1D Fund Donors

There are two important potential concerns for T1D Fund donors. One concerns Breakthrough T1D’s ability to draw donations from the T1D Fund for its own use. The second is that profits generated from investments the T1D Fund makes will be taken by Breakthrough T1D for its use rather than remain in the T1D Fund. For many T1D Fund donors, it was an important condition of their donation that Breakthrough T1D could not take either of these actions, and they may not have given if there was a real risk.

To be clear—and this is important—Breakthrough T1D has repeatedly stated that they will not take, for their own use, donations to the T1D Fund, and they will not take, for their own use, profits generated from successful T1D Fund investments.

These statements are reassuring. However, if they are not equally reflected in a legally binding operating agreement, with full clarity, then they are just words and goodwill that could change at a whim and at will, perhaps during an economic downturn or a future leadership change. There needs to be a real check and balance, which, prior T1D Fund leaders argue, has been removed.

Potential Concerns for Mainstream Investors

In addition, large mainstream investors also need reassurance that the T1D Fund will continue to prioritize investment returns while pursuing a T1D mission. Attracting traditional investment to T1D research that would otherwise have been bypassed is one of the T1D Fund's great successes to date. The T1D Fund has developed investing expertise; Breakthrough T1D has grant-giving expertise. If investors perceive that the T1D Fund has lost its ability to make quality investment decisions due to Breakthrough T1D's disproportionate influence, it will quickly lose credibility. Again, the right checks and balances are needed.

Breakthrough T1D says that nothing really has changed, that the T1D Fund still has an independent investment committee, and that the T1D Fund today is as effective, if not more effective, than it has been in years.

To most of us, these are just dueling narratives. Perhaps it is time to let us all see the changes to the operating terms in full, particularly in amendments #6 and #9, to put this back-and-forth to bed once and for all.
 

Moving Forward: Full Transparency, the Fastest Way

JDCA strongly believes the only way to move forward is with full transparency, accountability, and public debate. Breakthrough T1D seems to be hoping that this news cycle will end and that things will just move on. We think this is a miscalculation; the rift is too wide. The individuals and organizations involved are too high-profile and influential. There is also a real possibility of legal action, which, if litigated, would put all of this into the public domain and likely move the story into mainstream media. Some have called for an independent investigator, which seems extreme on one hand, but might not be a bad idea. 
 

Key Points from the Two Letters:

Key Points from the Breakthrough T1D June 18 Letter:

• Signed by the current and outgoing International Board of Directors Chairs (Lisa Fishbone Wallack and Karen Shishino Jordan, respectively).
• Sent to “former T1D Fund Board Members and Advisors.”
• Notes that the T1D Fund has always been a wholly owned subsidiary of Breakthrough T1D. This means that ultimately, Breakthrough T1D holds, and has always held, ultimate control.
• Accuses “a subset of the Fund Board” in pursuing a “series of changes that steadily widened the gap between the Fund and the Foundation (Breakthrough T1D parent entity) . . . with the goal of ultimately separating them.”
• Claims that this ‘subset’ also started the process to create a new 501(c)(3) that would be independent and revised “governance, compliance, and policy documents to reduce Breakthrough T1D’s oversight of the Fund.”
• Says that prior leadership “refused to grant Breakthrough T1D officers signatory rights on Fund investment accounts.” (We don’t know why this was called out as essential if Breakthrough T1D does not intend to utilize T1D Fund money.)
• Seeks to reassure readers that nothing has really changed about the T1D Fund, and/or these changes will make it stronger.
• Notes that this was a “unanimous” decision by the IBOD (International Board of Directors).
• Ends by thanking the readers for their “dedication, leadership, and contributions.”

Key Points from the Prior T1D Fund Leaders' June 24 Open Letter:

• Say they felt “compelled to write this letter” due to actions that represent a “breach of trust” and “gravely threaten the donor confidence needed to accelerate a cure.”
• Reiterates: “On May 8, without warning or discussion . . . Breakthrough T1D unilaterally dismantled that independence. BT1D terminated the T1D Fund Chairman, Vice Chairman, the head of the Nominating and Governance Committee, and a member of the Investment Committee who had served as a former T1D Fund Board Chair.”
• Reminds us that “all other T1D Fund independent directors . . . resigned in protest.”
• Claims that many prior donors to the T1D Fund are canceling their pledge agreements and that “the Helmsley Charitable Trust – the largest single funder of T1D causes over the past two decades, contributing over $1.5 billion since 2008 – has since terminated its relationship with the T1D Fund.”
• States that Breakthrough T1D had been planning for “many months” to change the T1D Fund’s operating agreement, keeping this secret from T1D Fund leadership, preventing them from any input or opportunity for collaborative compromise.
• Notes that the same people who were about to be removed were out spending many hours of their personal volunteer time, money, and energy raising money for the T1D Fund, unaware of the imminent changes.
• The letter calls on Breakthrough T1D to “address the serious governance, legal, and leadership, and communication failures” and to provide “full transparency regarding the decision-making process.”
• It ends by asking all supporters to reach out to the Breakthrough T1D board and leadership to request a full accounting.

 
Breakthrough T1D June 18 Letter: Access Here
T1D Fund Leaders' June 24 Open Letter: Access Here