This article was updated in December 2020 to include the latest information about layoffs and cutbacks.
All around the country, the economic effects of the COVID-19 crisis is hitting nonprofit advocacy organizations hard.
As fundraising dries up, many groups are facing a fight for survival, even though Congress approved a financial lifeline designed to offer some help during the summer.
Within our Diabetes Community, multiple organizations are feeling the pain with forced furloughs, program cuts, and more. Here’s what we know so far.
In November, the diabetes data nonprofit Tidepool announced it would be cutting 40 percent of its staff due to pandemic challenges.
Based in Northern California, Tidepool has been around since 2013, developing a digital platform combining the data from many diabetes devices in one online hub.
It’s one of the most visible offshoots of the grassroots #WeAreNotWaiting diabetes DIY community.
More recently, Tidepool has been focusing its efforts on developing a Closed Loop smart algorithm that could operate a so-called Artificial Pancreas system. The organization is finalizing its submission for the Food and Drug Administration (FDA) as of late 2020.
But on Nov. 17, Tidepool announced layoffs for a significant chunk of its employees. Twenty employees were laid off, cutting the total down to 41 people.
“The impact from COVID-19 forced us to continually reimagine how to keep our team together and thriving,” Howard Look, Tidepool co-founder and CEO, wrote in a statement.
“As the financial impact of the pandemic stretches into the New Year, it is with heavy hearts that we make reductions to our most precious resource — our hardworking and extraordinary people.”
For JDRF, this has been a rough year because of COVID-19, too, with fundraising cuts forcing furloughs.
In late July, JDRF announced it would be closing chapters across the United States, consolidating events (even beyond those that have transitioned to virtual gatherings), reducing salaries, and laying off employees at the local and national levels, from the 700 people at year’s start.
The reason: JDRF saw a 40 percent decline in overall fundraising during the first half of 2020, affecting all projects, according to CEO Aaron Kowalski in this interview with DiabetesMine.
The cuts affect everything, including funding research on new technology and potential cures, education and awareness efforts, congressional advocacy for new legislation and policies, and lobbying pharma and health insurers for better coverage and access to medical necessities.
Ayana Young, JDRF’s national manager of public relations and communications, offered this statement from the organization:
“The global pandemic has affected nearly every business and organization in the nation, and JDRF is not immune. As a result of the need for (physical) distancing, and our commitment to the safety of our employees and all members of the T1D community, we have canceled all our in-person events, resulting in a reduction of revenue. As a result, we cut operating expenses.”
JDRF’s first move in spring was to ask its executive leadership to take a 20 percent pay reduction, and all other employees were initially cut back to a 4-day workweek.
“Unfortunately, those measures were not enough, and we’ve made the painful decision to furlough some JDRF employees for two to three months,” the organization now states.
Notably, among those furloughed was Nicole Johnson, a former Miss America turned prominent diabetes advocate.
She’s been serving in a JDRF senior leadership role since 2017, focused on behavioral health and psychology initiatives.
In May, Johnson announced she had opted to move forward with another career opportunity rather than wait out the JDRF furlough.
But JDRF says it does remain committed to funding all existing research grants supporting new technology and cure research.
Its Bag of Hope program, which provides newly diagnosed families with a pack of resources, will also continue, though with physical distancing measures in place for delivery, JDRF says.
The American Diabetes Association (ADA) has shifted to a virtual fundraising platform and is transitioning all in-person events to online, including the huge annual Scientific Sessions in June and all diabetes summer camps.
See details on that directly from the ADA’s CEO here.
On May 15, the ADA announced it would let go more than 200 staffers around the country.
Among them was Matthew Netto, who served as associate director of event production for the organization.
He shared on LinkedIn: “Seeing all of my former colleagues from the American Diabetes Association posting their offerings of support is very touching. None of us did anything wrong but due to circumstances beyond our control we had to be laid off.”
Many smaller, local nonprofits are heavily affected too.
For example, CarbDM, the San Francisco Bay Area-based, 9-year-old org that supported type 1 diabetes families, was forced to shut down July 1 as a result of the pandemic.
Founded in 2011 by D-Mom Tamar Sofer-Geri, whose daughter was diagnosed as a child, the organization held hundreds of in-person programs over the years, including its signature mingling and educational events “Coffee and Carbs.”
The org made the announcement in a public letter to the community on April 28.
Several of the programs and initiatives created by CarbDM will live on, being picked up by JDRF as well as Beyond Type 1 and the Diabetes Youth Foundation (DYF) organization in California.
“I wish it wasn’t so, but many organizations big and small really are struggling right now,” says longtime type 1 Krystle Samai in California, who took over as CarbDM’s executive director about 2 years ago.
Samai tells DiabetesMine that the org had primarily relied on donations: 50 percent from individuals, 25 percent from corporations, and 25 percent from program revenue.
While operating on a “shoestring budget,” the org had started 2020 on a strong note with money in the bank to pay its 2.5 full-time staffers and continue to expand its impact and reach.
“The global pandemic truly upended everything,” Samai says. “In early March, COVID-19 really began to impact our Bay Area community and the economy took a nosedive.”
Despite transitioning to virtual events, the org saw corporate donations drop by 90 percent for one of its key forums that typically brought in more than 500 people.
“Whatever CarbDM might have lacked in infrastructure and funding, we absolutely made up for in heart and commitment,” she says. “And I know that these things will not change.”
While the above orgs have seen dramatic effects, others are working to weather the storm.
One example is TCOYD (Taking Control of Your Diabetes), which hosts diabetes education expos around the country. The org has also shifted in-person events to online or future dates, but it currently hasn’t had to let go any staff, we’re told.
Beyond Type 1, the Northern California-based advocacy powerhouse that’s now working closely with JDRF, says it’s closely monitoring the situation but hasn’t been negatively affected.
“We are aware that COVID-19 has forced many organizations to make changes, us included… (but) because so much of the work we do to serve the community was already digital in nature, we were perhaps less directly impacted than many other entities,” CEO Thom Scher tells DiabetesMine.
Scher says Beyond Type 1 moved to online programming, revised some timelines on new projects it had planned to roll out, and is reallocating internal resources to prioritize COVID-19-related initiatives.
So far, the org is still going strong.
“Fortunately, we have not had to make broad staffing changes, though we have seen many other organizations forced to make hard choices to weather the ecosystem-wide decline in individual giving and the tremendous uncertainty around when, if, and how in-person events will resume,” Scher said in May.
Even as some nonprofits are hard-hit by the current crisis, good work continues as many collaborate in new ways to help the D-Community in these difficult times.
More than 100 diabetes organizations and companies are collaborating and supporting this effort in some way.
A joint JDRF-Beyond Type 1 statement says: “Together, we can tap into the power of the global diabetes community to help curb the spread of COVID-19 and save lives.”
DiabetesMine is proud to be participating as a supporter alongside many leading orgs and companies from across the world.