Home Investigations Cancer Patients’ Families Get Just a Quarter of Dance Marathon Funds

Cancer Patients’ Families Get Just a Quarter of Dance Marathon Funds

Cancer Patients’ Families Get Just a Quarter of Dance Marathon Funds

The nonprofit Embrace Kids Foundation appears to be deliberately misleading the Rutgers community, in giving families of cancer patients far less money than Dance Marathon participants have been led to believe.

The Rutgers University Dance Marathon is the biggest charity event on campus: big in terms of the number of participants, the extent of its impact, and the amount of money raised for and during the event. In 2019 the Dance Marathon reportedly raised a record-breaking $1.12 million in donations, which Dance Marathon’s 2,000 student dancers and volunteers are told go towards children with serious illnesses, and their families.

Dance Marathon participants proudly say that they’re dancing “For the Kids,” and that 100 percent of the money raised in the runup to Dance Marathon goes towards the Embrace Kids Foundation, a New-Brunswick based nonprofit organization.

“Embrace Kids relies on a lot of this fundraising to do the different programs they have,” said Jonathan Zimmerman, RUDM’s director of finance from May 2018 to April 2019. “I think everyone’s really happy with the support we’re able to provide. Which we get to see directly go to these families.”

But despite the fact that Dance Marathon fundraising efforts are one of Embrace Kids’ major sources of revenue, few student participants know who is ultimately receiving the biggest cut of the money raised for the event. In a two month long in-depth report, the Rutgers student I-Team has found that only around a quarter of it goes towards directly assisting families, while a substantial amount more of the money Embrace Kids makes off of Dance Marathon goes towards funding hospital-based research and subsidizing costs for the Rutgers Cancer Institute to instate an endowed chairmanship, with the largest percentage going towards paying its own staff salaries and overhead costs.

Through a lack of transparency regarding what students are really raising money for, it seems as though Embrace Kids has been deliberately misleading the Rutgers community, as it is clear that the amount going directly to families is much less than Dance Marathon participants are led to believe.

Where Dance Marathon Money Goes

So, if the money isn’t going directly to families, where is it going? To start with, since Dance Marathon raises money through online peer-to-peer fundraising, money accrued by students via their online fundraising pages doesn’t directly go to Embrace Kids. Rather, the Foundation uses a software company called Blackbaud, which itself takes over 11% of the money Rutgers students raise every year in the runup to the event.

Even though Dance Marathon has raised over $1 million, Embrace Kids has yet to receive a $1 million from the event. Based on Embrace Kids’ 2016-2017 financial statements, the Foundation receives over $100,000 less than the amount that Dance Marathon raises.

Even so, the majority of revenue Embrace Kids accrues over the course of the year comes from Dance Marathon, even with Dance Marathon and Embrace Kids remaining separate organizations.

Dance Marathon is a student-run event, planned and operated by members of the Rutgers student body, which receives separate funding and support from Rutgers and other local organizations to underwrite the costs of the marathon. Embrace Kids, on the other hand, is a nonprofit whose offices are located right across the street from Robert Wood Johnson University Hospital in New Brunswick.

Both Dance Marathon’s participants and its central planning team– the board of students in charge of the event — work closely with Embrace Kids, and have long operated under the understanding that all the money they raise will go directly to families in need. Even Embrace Kids’ Manager of Programs and Family Services Armaan Saxena claimed in an interview that “90 percent of the money that the programs support go directly to the families, and then 10 percent goes to programs and the support and the major gifts.”

But the Foundation’s financial reports to the IRS tell a very different story.

For example, Dance Marathon raised $380,000 in pledges for Embrace Kids during 2011, according to the Foundation’s tax forms. That same year, however, Embrace Kids reported that it gave around $25,000 in grants to children and families, while it donated $262,000–10 times the amount it gave to families–to Robert Wood Johnson Hospital for what is listed as “cancer research.”

In 2012, the Foundation increased its grants and scholarships to families to $206,000, but continued to give Robert Wood Johnson even more — around $280,000, listed under “cancer treatment.”

Finally, in 2014, the Foundation pledged $1.5 million to the Rutgers Cancer Institute to fund its own endowed chairmanship, while continuing to donate only $300,000 in individual grants to children and families. Figures for 2018 were not publicly available at the time of this writing.

All told, during the six-year period between 2011 and 2016, the Foundation gave more than $2.7 million to the Rutgers Cancer Institute, Robert Wood Johnson Hospital and the Boston-based Next Step Fund, while giving about half as much money — $1.4 million — directly to the families it claims to be using the majority of its donations to support.

During those same six years, Rutgers students raised over $3.5 million through Dance Marathon fundraising–over double the amount that is given to families of sick children.

Rutgers students work hard all year to raise this money, with each student raising at least $350, and some students more than $1,000. 

Rutgers students work hard throughout the school year to raise this money, which can take them anywhere from a few weeks to several months. The minimum amount the average student must raise to participate in the event is $350; for the Central Planning Team, this minimum is increased to $700, although some members go above and beyond, raising $1,000 or more during the school year leading up to Dance Marathon.

In addition to the fact that much less money is going to families than one might assume, the aid that Embrace Kids does provides is supposedly non-medical, as is publicized both on the websites of Dance Marathon and Embrace Kids. Student participants and organizers of the event are made to believe so as well, though this doesn’t seem to be true.

“What’s really cool is the money is not spent on cancer research, or to pay medical bills but everything else, like putting gas in somebody’s car or paying rent or helping patients pay for school,” Jennifer Noji, Dance Marathon’s marketing director for 2017, told NJ.com.

It’s clear from Embrace Kids’ tax forms, however, that they pour a significant amount of money into both the Rutgers Cancer Institute and Robert Wood Johnson Hospital for cancer research and cancer treatment.

For 2016, the monetary gifts Embrace Kids donated to Robert Wood Johnson, the Rutgers Cancer Institute, and other organizations such as the Next Step Fund make up around 20% of Embrace Kids’ reported expenses that year — direct donations to families, on the other hand, make up roughly 22%.

The rest of the organization’s expenses go to employee salaries and other fees. A significant portion of these “other fees” is the money Embrace Kids keeps and spends on itself, an amount that exceeds both its donations to organizations and individuals alike.

If that’s the case, how much money is really going directly to families?

According to the organization’s tax forms, around $210,000 per year is given directly to the families, with another $33,720 going towards scholarships for children who are part of the program. Divide this $210,000 by the 200 families Embrace Kids provides assistance to, and that’s just over $1,000 going to each family annually.

Some of this money is given to families via prepaid visa gift cards, with Embrace Kids operating under the assumption that these families will use the money to pay for groceries, gas, rent and household bills. To qualify for this financial assistance, Embrace Kids believes it understands the family’s situation enough to trust that the money given will be put towards non-medical needs.

“It is good faith and because we know these families so well,” said Saxena. “We know that they are struggling to put food on the table. We understand what their needs are so we know that they won’t be abusing the program.”

As Saxena makes clear, the money given to each family is on a case-by-case basis where those that are struggling financially need more help than others. Other families work with the more social aspect of Embrace Kids such as the RU4Kids program.

“It really depends,” Saxena said. “Each family is a fingerprint. Some families are very well off financially and they won’t need any support. Other families have extremely tough home situations, single-parent household, parent works per diem, so them taking off time from work really puts them back. Families like that really need a little bit more assistance. We’re really able to go above and beyond for the families that need it most.”

While some families require and receive more assistance than others, $1,000 doesn’t go too far–for some, that might not be able to cover much more than one month’s rent. Furthermore, the amount of families that Embrace Kids assists hasn’t increased substantially in the past 5 years, and has instead stayed at around 200 families per year.

Embrace Kids’ mission statement seems intentionally unspecific in terms of goals, in that it claims to exist to “lighten the burden, maintain normalcy and improve the quality of life for families whose children are facing cancer, sickle cell and other serious health challenges.” With this in mind, it seems like both student participants of Dance Marathon and the families Embrace Kids assists are not aware of the disparity between the amount of money Embrace Kids takes in and what it gives away.

“I would think that [the money raised during Dance Marathon] would go toward some research, and to help with some of the activities that they do,” says Jennifer Jardine, a parent of one of the children receiving assistance from Embrace Kids. “But I don’t really know where the rest of it goes. I never really asked that question.”

Even Embrace Kids Executive Director Glenn Jenkins was unable to give a clear answer when asked how much each family receives per year in direct grants.

“Some families do not want or do not accept or take financial assistance, and then others we provide many of thousands of dollars in assistance each year in direct financial aid,” Jenkins said. “Our goal is that their lives are better by their interaction with Embrace Kids, so it’s not just a band-aid, paying a bill, but that we have set them up to do better in life then they would if they had not met us.”

In addition to giving monetary gifts to families, Embrace Kids grants 18 to 24 scholarships to young patients with cancer or blood disorders who decide to go to school at a community college. If these individuals want to transfer or do their post-secondary education at a University, Embrace Kids will not be able to pay for their education. These scholarships amount to around $2,100 per student.

According to Jenkins, Embrace Kids provides $80,000 to $100,000 a year in scholarship funds to students, but the Foundation’s tax forms indicate only $25,000 to $55,000 set aside for scholarships between 2011 to 2016. Embrace Kids reached its highest allocation of scholarships in 2017, at $75,000.

On the other hand, the Foundation provides grants to the following organizations: Robert Wood Johnson University Hospital, The Next Step Fund, Boston Children Hospital and Rutgers Cancer Institute of New Jersey. Each of these grants help fund a variety of different programs for Embrace Kids or their organization’s own programs. One of those programs include the David E. Zullo Pediatric Palliative Care program (PACCT), which allows a medical team to treat patients from home — especially during the unfortunate event when a child is reaching his or her end of life.

The Next Step Fund and Boston Children Hospital are beneficiaries of the donations generated from Tackle Sickle Cell, which is an off-branch of the Embrace Kids Foundation focused on bringing awareness and raising funds for people with sickle cell anemia. Led by Rutgers football alums Devin and Jason McCourty, Tackle Sickle Cell fundraising events include a blood drive, 5K run/walk event and a casino night in Boston.

Donations made to the Boston Children Hospital are used in the hospital’s pediatric department. Donations to the Next Step Fund help run four-day summer camps called “campferences” and a recording studio where young people with serious illnesses can create their own songs.

Money Sent to Massachusetts

Interestingly, Embrace Kids mission statement is to help the needs of patient families in the New Jersey/New York City metropolitan area, but some of the funds generated goes to two organizations in Cambridge and Boston, Massachusetts since that is where the McCourty twins train with the New England Patriots. From 2017, Embrace Kids’ most recent tax form shows over 50% of the grants given to organizations and hospitals went to the Boston Medical Center and the Next Step Fund in Massachusetts.

The following pie charts are a breakdown of the three expenses of Embrace Kids: Grants to families (direct assistance and scholarships), Grants to organizations, and expenses to run the foundation (managerial services and employee compensation)

Executive Director Jenkins said Embrace Kids’ mission fulfillment rate was between 82%-85%, from 2012 to present day. However, about 35 cents of every dollar raised goes to directly assist individuals or organizations, paying for their non-medical needs.

The rest of the money then goes towards Embrace Kids employee salaries, payroll taxes, employee benefits and a large sum of “other” fees that are provided to non-employees.

Besides Jenkins, there are just four full-time staff members and 20 part-time Rutgers student workers, who work in the summer. The salaries and compensation for these employees take up almost half of the total expenses Embrace Kids spends every year, which is 15% higher than the donations given to families. This begs the question: how does a team of a 25 members generate more funds for themselves than they give to the actual families?

Employee salaries and compensation eat up almost half of  Embrace Kids expenses each year — and 15% more than donations given to families

Jenkins’ own salary is over half the total amount of money Embrace Kids directs towards families — he was paid $176,000 in 2016, and $192,704 in 2017. According to Jenkins, his role at Embrace Kids is “leadership, management, being a liaison to the hospitals, to the Cancer Institute… you know, just responsible for everything.” He’ll had planned to take a month-long vacation to Lithuania and Italy in summer 2019, during his time off.

Any non-profit organization needs to compensate its employees appropriately, but Embrace Kids seems to be helping its employees significantly more than it helps  recipient families.

For grants to organizations or individuals, money allocations are relatively the same except for the $1.5 million commitment made to the Rutgers University Foundation in 2014 for the Embrace Kids Foundation endowed chair to Dr. Peter Cole.

Embrace Kids’ largest donation was only used to recruit Dr. Cole rather than provide any sort of direct assistance to families. It was paid in $300,000 increments between December 2014-2017.

“Embrace Kids just helped provide part of the funding to recruit [Dr. Cole] and have him work in the [Rutgers Cancer Institute],” said Jenkins. “We are not in any way directly involved with research. We are not qualified to do that, so we have no direct involvement in the research other than funding the researcher.”

The endowed chair isn’t the only kind of recruitment Embrace Kids has funded. Months after the endowed chair was announced, the Foundation made a $1 million commitment to support recruitment of faculty in the pediatric cancer research department at CINJ. In 2016, the Foundation gave $70,000 to the Rutgers Cancer Institute to fund the addition of a pediatric sickle cell and hemoglobinopathies nurse navigator, expanding Robert Wood Johnson Medical School’s comprehensive sickle cell center.

Research into cancer and blood disorders is expensive, but rather than giving their money directly to families, Embrace Kids claims to be focused on the long-term investment of research. Jenkins is working on yet another program Embrace Kids will fund, which he hopes will be announced in February or March 2020.

“I have a new program that I’m working on that will hopefully be announced next year, but I can’t be specific about it at this point,” said Jenkins. “When you work with a medical program and a hospital, there are so many different stakeholders to get a new program off the ground.”

  Since its $1.5 million commitment to an endowed cancer research chair, Embrace Kids has pocketed hundreds of thousands of dollars of leftover fundraising money, instead of putting those funds towards directly assisting families. In 2017, the Foundation kept almost $700,000 of its revenue, to build up its net assets to over $1.6 million.

The creation of a new program is likely the reason Embrace Kids is saving up money to fund it. Since its $1.5 million commitment to the endowed chair, Embrace Kids has pocketed hundreds of thousands of leftover fundraising money instead of putting those funds towards directly assisting families. In 2017, the Foundation kept almost $700,000 of its revenue to build up its net assets to over $1.6 million.

Not only Rutgers students, but other donors operate under the assumption that the Foundation is raising money for the non-medical needs of patients and their families. While Embrace Kids is helping with these needs, a larger sum of its revenue goes into hiring faculty and providing compensation for them.

Too, almost all of the past tax forms of Embrace Kids showed many of the donations to hospitals and organizations were for “cancer treatment.”

The Foundation’s 2017 tax form was the first time Embrace Kids actually provided different reasons for the allocation of funds.

The most interesting grant was $45,400 to Robert Wood Johnson Hospital to build a meditation garden.

It makes out wonder what else Embrace Kids has funded that underlies the “cancer treatment” reason the Foundation puts in their tax forms.

The most interesting grant: $45,400 to Robert Wood Johnson Hospital to build a meditation garden.

From the mission statement of Embrace Kids, it’s difficult to say how the Foundation is allocating its money. Donating to the recruitment of researchers or supporting the Next Step Fund’s music studio can be seen as “directly assisting” families and can always be connected to Embrace Kids mission.

However, the Embrace Kids Endowed Chair Dr. Cole has a different account of where the Foundation’s money is going. Dr. Cole stated that the $1.5 million gift doesn’t in anyway benefit families directly, but indirectly through research and clinical trials.

“None of [the endowed chair money] goes directly to patients or to supporting supportive care of patients,” said Dr. Cole. “All of it is being used for research. Any benefit to patients will be indirect.”

“None of [the endowed chair money] goes directly to patients or to supporting supportive care of patients. All of it is being used for research. Any benefit to patients will be indirect.” — Cancer researcher Dr. Peter Cole

Dr. Cole stated that the $1.5 million gift doesn’t in anyway benefit families directly, but indirectly through research and clinical trials. This contradicts Jenkins’ statement, to the effect that the money is funding Dr. Cole salary and compensation, not his research or clinical trials.

What is truly hidden for kids and for Rutgers students who dance and fundraise at Dance Marathon is who, and what, they’re really dancing for. Students and other donors are dancing with the kids, but they aren’t necessarily dancing “For The Kids.”

Students scream and cheer for the children dancing on stage. They grab their hands and dance along with them, believing that the money they raised goes directly to them. These donations do help the kids — but not without funding Embrace Kids research, faculty and employees first.

See the full project here.


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