see faustmanlab.org,
pubmed.org faustman dl
the juvenile diabetes foundation is like the aryan nrotherhood, one percent motor vyclr vlubs, police departments, churches etc it is all about the money
jury. ullification for all honest killers and nothing for tnose who injure 4 year olds who only later discover thst their psrents were only out fir the money
upon resvhing msjority ask them why and deal eith themas you see fit
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Dave Johnson says his immediate reaction to his daughter’s diagnosis of Type 1 diabetes at age 4 was typical of any father’s.
“It was my baby girl, and my response was I’m going to fix it or pay someone to fix it,” said Mr. Johnson, president and chief executive of the hotel management company Aimbridge Hospitality. “I dove in, spoke to some smart people. But then, I was hit between the eyes that there wasn’t a lot that I was going to be able to do.”
That was 22 years ago, and what he did do was volunteer with gusto, organizing fund-raisers in the Dallas area where he lived and working his way up to membership on the executive committee of the international board of the Juvenile Diabetes Research Foundation, the main nonprofit group making grants and evaluating research on the disease.
But recently, Mr. Johnson did something that appealed to his business side: He and his wife gave $1 million to a new nonprofit organization, the foundation’s T1D Fund, which invests in companies doing research into Type 1 diabetes. Any financial returns are used to make more investments.
“The fund is extremely transparent and crystal clear in its mission,” Mr. Johnson said. “We have a quarterly call and get updates when we’re making investments. It’s run similar to a for-profit.”
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Structured like a private equity fund, the T1D Fund has a minimum donation of $500,000. The fund, which received $32 million in seed funding from the foundation, has a goal of reaching $80 million. It already has $55 million.
Type 1 diabetes is an autoimmune disease that attacks the pancreas and its ability to produce insulin, while Type 2 is a metabolic condition that affects how the body uses glucose. Type 1 also affects fewer people — about 200,000 new cases a year compared with three million for Type 2. Given the number of those affected, Type 2 diabetes has attracted ample funding, while Type 1, which is generally diagnosed in children, has attracted fewer resources.
The fund’s goal is not only to attract more money for research into the disease, but also to move faster than a foundation and speed along advances in treatments.
Given the nature of life science research, the fund’s backers point to the possibility of advances in research into other autoimmune diseases. While those advances would not directly affect people with Type 1 diabetes, they could bring returns to the fund that could then be reinvested in different companies.
“The fund makes very quick decisions from start to finish,” said Ellen Leake, vice chairwoman of the foundation’s international board, which has also agreed to cover all operating expenses over the next four years.
In 2015, the foundation asked Sean Doherty, general counsel of the private equity fund Bain Capital, to create a nonprofit fund and to be its chairman. The goal was to use a different structure to speed new technologies and products to market.
“There was a lot of money on the sidelines that wasn’t giving,” said Mr. Doherty, whose son, Finn, has Type 1 diabetes. Because the foundation funds 70 percent of the nongovernment money going to Type 1 diabetes research, he added, “you were kind of throwing your money into a very large pond, and that created a donor disconnect.”
The new fund aims to invest all of its money in four years. “We’ve created a vehicle that has 100 percent concentration risk in one disease that affects 1.5 million Americans, and there is no investment return track record,” Mr. Doherty said. “Doing so philanthropically, we have the luxury to take that risk.”
Perhaps not surprisingly, it has attracted donors who have made their money in finance and business and are comfortable with risk.
John Mallory, a partner in the investment management division at Goldman Sachs in Los Angeles, said he wasn’t attracted to the foundation’s model, which relies heavily on fund-raising through events like walks and galas, when he learned his son had Type 1 diabetes almost three years ago.
Mr. Mallory initially thought of investing directly in an insulin therapy company, but thought better of it given his lack of knowledge of companies researching diabetes treatments.
When he heard about the new fund, he said, he and his wife immediately wanted to participate. “What the fund was good at doing was saying, ‘We’re going to try to fill some of that gap,’” he said. “‘We’re going to back some of the companies even if they don’t have the same investment potential. We’re going to do it at an earlier stage.’”
The T1D Fund is also using the imprimatur of the foundation’s researchers and its own due diligence process to act as a stamp of approval for the companies it invests in.
Ashleigh Palmer, chief executive of Provention Bio, a clinical stage biopharmaceutical company in New Jersey that is working on vaccines, including one for Type 1 diabetes, said he raised $28 million in a recent fund-raising round, with a comparatively small amount coming from the T1D Fund.
“We’ll benefit enormously from their network and their know-how and the doors they can open for us,” Mr. Palmer said.
The T1D Fund has announced seven investments of $1 million to $2.5 million since the beginning of the year, Mr. Doherty said.
As is the case with other nonprofit groups, donors are asked to give their knowledge in addition to money. Mr. Mallory has been working to identify other donors with a connection to Type 1 diabetes in the Los Angeles area.
Jay Eastman, who runs the private equity fund EG Capital in New York, and his wife, Katama Eastman, have been enlisted for their expertise and networking skills. Mr. Eastman said he had talked to Mr. Doherty and Jonathan Behr, the managing director of the fund, about investments.
Ms. Eastman, who is the president of the New York branch of the foundation, had great success raising money from her friends and families at events. But the fund, she said, allowed their families to come together and make a large gift. (They would not disclose the amount.)
The Eastmans are motivated by the fund’s ability to speed technologies along. Their daughter, Merrill, was 15 months old in 2004 when they learned she had Type 1 diabetes. She recently received a monitoring system that measures blood glucose and then releases the right amount of insulin. It had been in the works for years.
“When she was diagnosed, doctors’ offices and manufacturers said it was two years away,” Ms. Eastman said. “Having a fund that was going to go and get these things more quickly was big.”
But an approach like this, which falls broadly into social impact philanthropy, carries some caveats. “The pros are the potential for larger amounts of money raised more efficiently — or a class of potential investors who will be less attracted to the world of donations than the world of investments,” Leslie Lenkowsky, a professor of philanthropic studies at Indiana University, said. “The negatives are the organization really has to prove that it can do things.”
“To the extent the return is blended between social value and financial value, measuring the social value is difficult and very long term,” he added.
There is also the risk that the money disappears without much to show for it.
But Ms. Leake, who is on the foundation’s international board, said the new fund “is a little bit different because it’s looking for viability and commercial uptake where a basic research grant is just about the learning.”
“Certainly the downside risk would be the perception that we would take riskier bets,” she added. “But stacked up against research grants, we’re willing to put our money out there for the learning that comes from the investment.”
For its backers, though, this is about scientific advancement.
“Selfishly, I’d like to make a difference in my daughter’s life,” Mr. Johnson said. “But my heartstrings have also been torn by children whose parents don’t have the resources my wife and I do. These are great young people, and we’ve got to give them a shot.”
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