If you’re planning to give to a medical research charity before GivingTuesday on December 1, spend an evening with its public records before you spend a dollar. That goes for every donor this season, and doubly for families living with a diagnosis, since disease appeals tend to land hardest on people who already know the disease. The records are free, and most sit in government databases anyone can search. It’s worth the trouble because research money that never reaches a lab rarely comes back.
Confirm the Charity Is Real and in Good Standing
Start with legal standing, the dullest check and often the most useful. The IRS keeps a free lookup tool that confirms whether an organization can receive tax-deductible gifts. The same search pulls up recent Form 990 returns and a list of groups that lost their exemption automatically after three straight years of not filing.
Search by the nine-digit EIN on a donation receipt or the charity’s website rather than by name. The Federal Trade Commission’s donor guidance warns that some scammers choose names that sound a lot like real charities, which makes a name search easy to fool.
Very small groups are harder to read. Organizations whose gross receipts normally stay at or under $50,000 can file the Form 990-N e-Postcard instead, which reports little beyond contact details and a confirmation that the group is small. That’s no mark against a new family foundation, though it means asking the founders for an annual report.
Read the Form 990 Like a Grant Reviewer
The full Form 990 is where the real reading begins. It splits spending between programs, management and fundraising, and it discloses what the top staff are paid. ProPublica’s Nonprofit Explorer makes these returns free to browse. Its full-text search also lets a practice administrator vetting a corporate gift trace a board member or university grantee across several years of filings.
For a research charity, the grants section usually matters most. Grants to other organizations are listed by recipient, so you can see which universities and hospitals received money and how much. A group that calls itself a research funder but shows no research grants should be able to explain why. Education and awareness work is legitimate, but it isn’t research.
Resist the urge to judge everything by the overhead ratio. In 2015, federal and state regulators charged four sham cancer charities with taking in more than $187 million from donors who believed they were helping patients. Investigators said the groups reported more than $223 million in donated goods they had merely passed along, which made them look larger and more efficient than they were.
A flattering ratio can be manufactured. A list of named grant recipients is much harder to fake, because the university on the other end can confirm whether the money arrived.
What Donor Reviews Can and Can’t Show
Donor feedback has become evidence in its own right, especially at charities that raise research money through prize drawings, where every entrant is a potential reviewer. A Race Against Blindness reviews, for instance, run into the thousands, many of them written by people who entered the pediatric eye charity’s vehicle sweepstakes. The organization replies in public to most of the critical ones, which makes those exchanges worth reading closely.
Star ratings say little about whether a grant was well spent. What reviews can show is whether a charity treats donor questions as a nuisance or as an obligation. The FTC’s own advice includes searching a charity’s name alongside words like “complaint” and “review” before giving.
Prize fundraisers deserve one extra check. The official rules should name the sponsor and explain how winners are chosen. New York’s games of chance rules require drawings with more than $5,000 in prizes to register and post a bond or deposit, and the winners must be reported to the state within 90 days. A charity running an honest drawing has every reason to publish its winners, too.
Put the Research Claims to the Test
Fundraising emails love the words “cure” and “breakthrough.” Treat those claims like any other health information you find online, which means asking which study a claim comes from and whether the work has left the lab yet. A charity funding real science can usually name the paper within a day or two.
Credible research charities usually send grant applications to a scientific advisory board or outside peer reviewers before any money moves, then name the investigators they back. Clinicians fielding patient questions can go a step further by checking whether a trial the charity mentions is registered on ClinicalTrials.gov, which can be searched by investigator name or trial number. A listing isn’t an endorsement, since the government doesn’t review every study’s science.
Most promising leads never reach patients. An MIT analysis of more than 21,000 compounds tested between 2000 and 2015 put the odds of a drug going from first human trials to approval at roughly one in seven, and closer to 3 percent in cancer. A charity that admits this to donors is probably being straighter with them than one pinning a cure to a date on the calendar.
Donors can also ask, in a two-line email, “What came of the projects you funded three years ago?” A published paper counts as an answer, and so does a clean negative result. Silence usually deserves a second email.
Parent-founded charities often back early work that drug companies have little commercial reason to fund, and well-aimed money can travel far. Take the Cystic Fibrosis Foundation, which had put $150 million into Vertex’s drug program. In 2014, it sold its royalty rights for $3.3 billion. Some critics worried that such close ties to a drugmaker could pull a charity off its mission.
Follow the Industry Money
In a 2017 review of 104 large patient-advocacy groups, at least 83 percent took money from drugmakers, device companies or biotech firms. More than a third had a current or former industry executive on the board. Only one of the 104 said outright that it refused industry money, while just 12 had published policies on institutional conflicts of interest.
Corporate funding doesn’t make a charity corrupt, and some strong research partnerships depend on it. Donors still deserve to know when a group lobbying for a therapy takes money from its maker. Physicians and practice leaders can also run the names on a charity’s medical advisory board through the federal Open Payments database, which lists payments from drug and device companies to doctors and teaching hospitals.
Protect Your Gift and Your Data
Roughly 40 states require charities to register before soliciting their residents, usually with the attorney general or secretary of state. NASCO’s directory of state charity regulators points to each office, and a registry search can turn up lapsed registrations or enforcement actions that never made the news.
Phone appeals call for their own caution, because the caller may be a paid solicitor. In the 2015 cancer charity case, professional fundraisers often kept 85 percent or more of each donation. Ask what share of your gift reaches the charity, and give through its own website if the answer is vague. Deadline pressure deserves the same patience, since most legitimate charities will gladly accept the same gift in January.
Families already living with a condition have an edge most donors lack. Their specialist often knows which labs do credible work, so it makes sense to raise what you’ve read online with a clinician at the next appointment, charity claims included. Practices that field these questions regularly may find it useful to keep a short, dated list of vetted organizations and their EINs.
The donation form deserves a look too. A gift to a disease charity already hints at your family’s health, and some forms invite you to share more than a payment requires, like a loved one’s diagnosis. The usual privacy habits for health websites and forms apply here. Many charities rent or swap donor lists, and a short note with your gift asking them not to can stop that.
Personal fundraising pages for one patient’s experimental treatment are a different case. Under IRS Publication 526, gifts earmarked for a particular individual generally aren’t deductible. Ask who controls the account and where any leftover money goes. Giving to one can still be the kindest gift of your year if you know the family.
Run the Checks Before December 1
Pick one charity you plan to support this season and give it an hour this week. Confirm its status and open its latest 990. If the grant list checks out, send one question about what past grants produced, because charities doing careful work usually welcome that kind of attention.
The four cancer charities in the 2015 case kept soliciting for years because few donors asked hard questions. If the charity you funded last year vanished tomorrow, would a single lab notice?
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