The Smile Train: Leading Cleft Repair Charity
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When it comes to charities, subjectivity is the key word.
Evaluating charities is a subjective process, as is the process of charities reporting finances — making reports like the recently published “America’s Worst Charities” difficult to interpret.
Doug White
Doug White, an expert in fundraising management who is an author, professor and advisor, said there aren’t written-in-stone guidelines for how charities “should” perform financially.
He said many leaders in the philanthropic community agree that organizations should spend at least 65 percent of expenses on program costs and the other 35 percent can be delineated between fundraising and administrative costs.
But that’s not a be-all, end-all guideline. White said charities can fall out of those thresholds from year-to-year for reasons that aren’t all bad.
While common wisdom suggests lower administrative and fundraising costs is a good thing, and one can see why, charities still want to have a healthy infrastructure. White said 35 percent of expenses provides that threshold.
The problem with evaluating charities, he added, comes in how they report these expenses. On IRS 990 forms that are used for non-profits to report financial performance, organizations must report how much money was used on program services, administrative overhead and fundraising.
But some charities could see what many would consider administrative costs as program service expenses, or vice versa, thus, clouding how much money is actually spent on programs. It’s hard for even auditors to know exactly how much money was spent on what.
“I’m not saying all charities do that,” White said. “I don’t even think most of them try to game the system. That’s just awful.”
He said charities, on a large scale, aren’t intentionally circumventing IRS regulations set in place for financial reporting.
But many have a long way to go in terms of transparency.
White recommends charities have a link on their webpages to recent 990 filings, annual reports and audited financial statements for public viewing. Hundreds, if not thousands, of charities still fail to take this step.
“The point is, charities should be saying ‘We want to help you better understand us,’” he said. “To become more transparent with more disclosure is a really large challenge today for charities.”
After a new report pointed a finger at “America’s Worst Charities,” nonprofit experts are speaking out.
CNN recently published the results of a study ranking “The 50 worst Charities In America,” conducted by the Tampa Bay Times and the Center for Investigative Reporting (CIR).
The study focused its ratings on charities that give donations to for-profit solicitors to fundraise. Using these charities’ IRS tax filing information, researchers compared the total proceeds raised by solicitation to the total amount of money paid to for-profit solicitors. Of the $1.3 billion raised by the 50 worst charities, almost $1 billion was paid to companies that do their fundraising.
But some charity experts are speaking out, saying these nonprofits are too far on the fringes. In a recent press release, the president of the Association of Fundraising Professionals (AFP), a nonprofit support organization, said the investigation should not have solely focused on cases of solicitors who receive a commission, a practice widely viewed as unethical.
“The use of professional solicitors is not an indication of whether or not a charity is legitimate or effective. Many legitimate charities hire solicitors to assist in their fundraising,” he stated. “In the extreme cases cited by CNN and the Tampa Bay Times, solicitors are paid on a percentage- or commission-basis, a practice which is prohibited and considered unethical by the Association of Fundraising Professionals and most of the charitable sector.”
The report concluded that The Kids Wish Network, the Cancer Fund of America, and the Children’s Wish Foundation International are respectively America’s top three worst charities.
Crisis management specialist Melissa Schwartz, who is working with Kids Wish, told CNN/The Times that the charity hires solicitors so its staff can focus on the children and not on raising money. She declined to give specifics, saying the charity “is focused on the future.”
The Times/CNN note that the study focused on nonprofits that have a history of deviating from established regulations — pointing out that 39 have been apprehended by various state regulatory administrations. The study methodology was also reviewed by GuideStar, among other nonprofit experts.
Watt did note that the report on the worst charities serves an important purpose: educating donors about the importance of awareness and research when giving to charities.
“The list developed by the Tampa Bay Times and CNN will help, to some extent, educate donors about wise giving and issues to be aware of when deciding to make a contribution. Donors always need to take their time when making a gift, especially if they are considering giving to new or unfamiliar charities.”
To learn more about tips on how to donate wisely and track where your contributions are going, click here.
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Five of the 50 charities identified in a Tampa Bay Times/Center for Investigative Reporting investigation into just how little money they actually give to the needy are based in Maryland or Virginia.
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The entire investigation, which was published on Friday, concluded that the 50 named on their list of America as a whole actually donated just 4 percent of funds raised to those they say they serve. Six of them never actually gave any money at all to the people they say they’re serving.
Many of the charities included in the list are based in Florida, but out of the 50, five them are based in Towson, Silver Spring, Alexandria, Ashburn and Falls Church.
Of the five, the investigation concluded that the American Association for the Deaf and Blind, a Silver Spring-based outfit that the Times and CIR report has raised at least $1 million every year since 1984, committed just 0.1 percent of that money into direct cash aid.
The locally-based charities on the list include:
Rank
Charity
Headquarters
Direct Cash Aid
4
American Breast Cancer Foundation
Towson
5.3 percent
16
National Caregiving Foundation
Alexandria
3.5 percent
18
United States Deputy Sheriffs’ Association
Ashburn
0.6 percent
32
American Association for the Deaf and Blind
Silver Spring
0.1 percent
40
Circle of Friends for American Veterans
Falls Church
6.5 percent
The two representatives of the American Breast Cancer Foundation who are blamed for much of the organizations problems did not respond to the Tampa Bay Times’ questions.
The executive director of National Caregiving Foundation did not respond to inquiries by the Tampa Bay Times.
The president of the United States Deputy Sheriffs’ Association did not return numerous phone calls made by the Tampa Bay Times.
The American Association for the Deaf and Blind did not respond for comment.
Circle of Friends for American Veterans’ founder Brian Hampton defended the charity, saying he believes the organization is more effective by promoting awareness of homelessness than housing homeless vets. He also defended the organizations’ use of telemarketers because he says telemarketing call centers are cost-effective.
READ MORE at tampabay.com.
The annual Royals Charities Diamond of Dreams event is Thursday and will benefit the University of Kansas Hospitals neonatal medical home, which offers family-centered, long-term primary care dedicated exclusively to premature babies and those born with complex medical conditions.
This fundraiser, which starts at 7 p.m., will include appearances from current and former Royals, as well as a diverse menu, live entertainment and a silent auction. That will include items commemorating Baseballs Greatest Moments such as a Jackie Robinson autograph and photo display, a framed Hank Aaron autographed jersey, and signed jerseys from Johnny Bench and Carlton Fisk.
Prior to the on-field event, Royals Charities will play host to a VIP Party beginning at 5:30 p.m. That party will include food from the Capital Grille and Lidias and an exclusive silent auction highlighting more of the greatest moments in baseball history. These select items will be open for bid until 7 p.m. only. Tickets for the VIP Party are $250 per person.
Tickets for the on-field event only are available for $100 and may be purchased online at www.royals.com/diamondofdreams or by calling 816-504-4149.
Today
UMKC BASKETBALL CAMP: New mens coach Kareem Richardson will hold his first camp, for boys ages 8-18, today through Thursday at Swinney Rec Center. Call Conner Hampton at 816-235-2718 for more information.
Tuesday
DERON CHERRY GOLF TOURNEY: The 21st Annual Deron Cherry Invitational Golf Tournament is at Loch Lloyd Country Club. Proceeds benefit Score 1 for Health, a program that provides free health screenings for urban core elementary school children. Registration is at 8 a.m. with a 10 a.m. shotgun start. For information, call 913-707-4653.
SPORTING KC APPEARANCE: Sporting KC midfielder Paulo Nagamura will be at Kansas Sampler, 6858 Johnson Drive, from 6 to 7:30 p.m. He will meet with fans and sign autographs. The event is free.
Thursday
MOVIE SCREENING: The Good Son documents the boxing match between Ray Boom Boom Mancini and Koreas Duk Koo Kim, who died after falling into a coma after the bout. It will be shown at 7:30 p.m. at The Glenwood Arts, 9575 Metcalf Ave., in Overland Park.
HISTORICAL SOCIETY: Former Royals pitcher Bret Saberhagen will be at the KC Baseball Historical Society meeting at 7 p.m. at the VooDoo Lounge at Harrahs casino in North Kansas City. There is no cost to current KCBHS members; others may attend by joining the KCBHS at the door for $25 yearly dues. Questions, call 913-961-0929.
BOOK SIGNING: Sporting KC goalkeeper Jimmy Nielsen will celebrate the publication debut of his book Welcome to the Blue Heaven, Dont Bet Against the Goalkeeper at the Plaza Branch of the Kansas City Public Library, 4801 Main St. A public reception is at 6 p.m A program that includes Jimmy and co-author, Paolo Bandini, will begin at 6:30 p.m. and conclude with a question-and-answer session. A book signing will follow the event.
Saturday
BALL UP: The Ball Up Search for the Next tour will be at the Independence Events Center, where the streetball team will challenge the citys best players selected from an open run competition. The game will be filmed for the TV series, Ball Up Search for the Next airing this fall on FOX Sports 1. Kansas Citys team will be coached by Dennis Rodman. Doors open at 5:30 p.m. and the event begins at 7 p.m.
PUTTING THE BOOT TO ALS: The 5K is at 8 a.m. at Rockhurst High School. The course goes along Ward Parkway and the registration site is http://www.puttingthebootstoals.com/. Proceeds fund collaborative research to find a cure for ALS.
FALLEN HEROES 5K: The race is at Corporate Woods at 9 a.m., and supports the DEA Survivors Benefit Fund, which provides continued assistance to surviving family members of DEA Employees and Task Force Officers killed in the line of duty; http://www.survivorsbenefitfund.org/.
SPIRIT RACE: The 5K race is at CommunityAmerica Ballpark at 8 a.m., and benefits the Student Athlete Foundation of Kansas, which seeks to provide appropriate medical coverage to high school student-athletes in Wyandotte and Leavenworth counties through the use of certified athletic trainers; www.saf-k.org/5k.
Sunday
MOTLEY TRIBUTE: The Ban Johnson League will say Thank You Mr. Motley! at an event honoring Don Motley for his 60 years of service to the Ban Johnson League and Kansas City baseball community. Players from Motleys teams through the years and the baseball community are invited to participate in the festivities from 5 to 8 p.m. at the Negro Leagues Baseball Museum, 1616 East 18th St.
AIR IT UP RUN: The cross country obstacle course run with inflatable obstacles is at Shawnee Mission Park from 7:30 a.m. to 12:30 p.m. Supports the Johnson County Parks and Recreation Department; http://www.airituprun.com.
Coming up
GOLF CLINIC: Instructor Chuck Evans will play host to a free informational golf clinic at 9 a.m. on June 23 at Tiffany Greens. The goal is to introduce golfers to a program that teaches how to hit every shot pure and with a predictable ball flight.
DOUBLE ROAD RACE: Billed as the only road race with a halftime, competitors run a 10K race, take a break and then run a 5K. Its June 30 at Corporate Woods. http://www.doubleroadraceoverlandpark.com/
ATHLETICS REUNION: The KC Baseball Historical Society will play host to its annual reunion of the Kansas City Athletics on July 5-6. A reunion banquet with players and silent auction will be held July 5 at the Town Pavilion, cost is $65 per attendee. More than 30 former Kansas City As players are expected to attend, including Blue Moon Odom, Jerry Lumpe, Norm Siebern, Danny Cater, Jim Gosger, Phil Roof, Lew Krausse, Ray Herbert and broadcaster Monte Moore. For information, go to www.kansascitybaseballhistoricalsociety.com.
I always believed that giving to a good cause or helping victims of a disaster was a noble thing to do. I mean, “There but for the grace of God go I”, right? With the recent uncovering of scandals within the government, more and more investigators are digging to uncover other cases of fraud and mismanagement. Is nothing sacred anymore?
A recent investigation exposed by CNN, The Center for Investigative Reporting and the Tampa Bay Times have found that there are dozens and dozens of charities that basically do next to nothing for the causes they raise money for.
50 of the worst charities were looked at and it was concluded that they received 1 billion dollars over the last ten years, but the charities received only 50 million. Where did the money go? Well, the majority of the funds collected went to solicitors. These are the people who go out and raise the funds and collect the donations. This basically amounts to them raising money to pay themselves.
There are still many, many charities that actually distribute the majority of the monies collected to the intended recipients but these days it is wise to look before you open your wallet. For instance, one of the worst charities listed is an organization called “Kids Wish Network” that is supposed to collect money for terminally ill children and grant their wishes. Sound suspiciously familiar? The name is awfully close to the very legitimate “Make A Wish Foundation” which promises the same thing.
This is where the donor can be conned. Many people are told the names of these organizations and they feel that they have heard of them and what they do, so out comes the checkbook. Unfortunately they don’t realize that the “Kids Wish Network” raised $127 million dollars, paid their solicitors $109 million, paid their employees most of the remaining funds leaving less than 3% for granting wishes!
The 50 worst charities give less than 4% of donations raised to direct cash aid. One diabetes charity raised almost $14 million dollars over a ten year period and gave about $10,000 to patients. Another cancer charity paid a company owned by the president’s son almost $18 million dollars over eight years to solicit funds.
I always believed that giving to a good cause or helping victims of a disaster was a noble thing to do. I mean, “There but for the grace of God go I”, right? With the recent uncovering of scandals within the government, more and more investigators are digging to uncover other cases of fraud and mismanagement. Is nothing sacred anymore?
A recent investigation exposed by CNN, The Center for Investigative Reporting and the Tampa Bay Times have found that there are dozens and dozens of charities that basically do next to nothing for the causes they raise money for.
50 of the worst charities were looked at and it was concluded that they received 1 billion dollars over the last ten years, but the charities received only 50 million. Where did the money go? Well, the majority of the funds collected went to solicitors. These are the people who go out and raise the funds and collect the donations. This basically amounts to them raising money to pay themselves.
There are still many, many charities that actually distribute the majority of the monies collected to the intended recipients but these days it is wise to look before you open your wallet. For instance, one of the worst charities listed is an organization called “Kids Wish Network” that is supposed to collect money for terminally ill children and grant their wishes. Sound suspiciously familiar? The name is awfully close to the very legitimate “Make A Wish Foundation” which promises the same thing.
This is where the donor can be conned. Many people are told the names of these organizations and they feel that they have heard of them and what they do, so out comes the checkbook. Unfortunately they don’t realize that the “Kids Wish Network” raised $127 million dollars, paid their solicitors $109 million, paid their employees most of the remaining funds leaving less than 3% for granting wishes!
The 50 worst charities give less than 4% of donations raised to direct cash aid. One diabetes charity raised almost $14 million dollars over a ten year period and gave about $10,000 to patients. Another cancer charity paid a company owned by the president’s son almost $18 million dollars over eight years to solicit funds.
The annual Royals Charities’ Diamond of Dreams event is Thursday and will benefit the University of Kansas Hospital’s neonatal medical home, which offers family-centered, long-term primary care dedicated exclusively to premature babies and those born with complex medical conditions.
This fundraiser, which starts at 7 p.m., will include appearances from current and former Royals, as well as a diverse menu, live entertainment and a silent auction. That will include items commemorating “Baseball’s Greatest Moments” such as a Jackie Robinson autograph and photo display, a framed Hank Aaron autographed jersey, and signed jerseys from Johnny Bench and Carlton Fisk.
Prior to the on-field event, Royals Charities will play host to a VIP Party beginning at 5:30 p.m. That party will include food from the Capital Grille and Lidia’s and an exclusive silent auction highlighting more of the greatest moments in baseball history. These select items will be open for bid until 7 p.m. only. Tickets for the VIP Party are $250 per person.
Tickets for the on-field event only are available for $100 and may be purchased online at www.royals.com/diamondofdreams or by calling 816-504-4149.
Today
UMKC BASKETBALL CAMP: New men’s coach Kareem Richardson will hold his first camp, for boys ages 8-18, today through Thursday at Swinney Rec Center. Call Conner Hampton at 816-235-2718 for more information.
Tuesday
DERON CHERRY GOLF TOURNEY: The 21st Annual Deron Cherry Invitational Golf Tournament is at Loch Lloyd Country Club. Proceeds benefit Score 1 for Health, a program that provides free health screenings for urban core elementary school children. Registration is at 8 a.m. with a 10 a.m. shotgun start. For information, call 913-707-4653.
SPORTING KC APPEARANCE: Sporting KC midfielder Paulo Nagamura will be at Kansas Sampler, 6858 Johnson Drive, from 6 to 7:30 p.m. He will meet with fans and sign autographs. The event is free.
Thursday
MOVIE SCREENING: “The Good Son” documents the boxing match between Ray “Boom Boom” Mancini and Korea’s Duk Koo Kim, who died after falling into a coma after the bout. It will be shown at 7:30 p.m. at The Glenwood Arts, 9575 Metcalf Ave., in Overland Park.
HISTORICAL SOCIETY: Former Royals pitcher Bret Saberhagen will be at the KC Baseball Historical Society meeting at 7 p.m. at the VooDoo Lounge at Harrah’s casino in North Kansas City. There is no cost to current KCBHS members; others may attend by joining the KCBHS at the door for $25 yearly dues. Questions, call 913-961-0929.
BOOK SIGNING: Sporting KC goalkeeper Jimmy Nielsen will celebrate the publication debut of his book “Welcome to the Blue Heaven, Don’t Bet Against the Goalkeeper” at the Plaza Branch of the Kansas City Public Library, 4801 Main St. A public reception is at 6 p.m A program that includes Jimmy and co-author, Paolo Bandini, will begin at 6:30 p.m. and conclude with a question-and-answer session. A book signing will follow the event.
Saturday
BALL UP: The Ball Up “Search for the Next” tour will be at the Independence Events Center, where the streetball team will challenge the city’s best players selected from an open run competition. The game will be filmed for the TV series, “Ball Up Search for the Next” airing this fall on FOX Sports 1. Kansas City’s team will be coached by Dennis Rodman. Doors open at 5:30 p.m. and the event begins at 7 p.m.
PUTTING THE BOOT TO ALS: The 5K is at 8 a.m. at Rockhurst High School. The course goes along Ward Parkway and the registration site is http://www.puttingthebootstoals.com/. Proceeds fund collaborative research to find a cure for ALS.
FALLEN HEROES 5K: The race is at Corporate Woods at 9 a.m., and supports the DEA Survivors Benefit Fund, which provides continued assistance to surviving family members of DEA Employees and Task Force Officers killed in the line of duty; http://www.survivorsbenefitfund.org/.
SPIRIT RACE: The 5K race is at CommunityAmerica Ballpark at 8 a.m., and benefits the Student Athlete Foundation of Kansas, which seeks to provide appropriate medical coverage to high school student-athletes in Wyandotte and Leavenworth counties through the use of certified athletic trainers; www.saf-k.org/5k.
Sunday
MOTLEY TRIBUTE: The Ban Johnson League will say “Thank You Mr. Motley!” at an event honoring Don Motley for his 60 years of service to the Ban Johnson League and Kansas City baseball community. Players from Motley’s teams through the years and the baseball community are invited to participate in the festivities from 5 to 8 p.m. at the Negro Leagues Baseball Museum, 1616 East 18th St.
AIR IT UP RUN: The cross country obstacle course run with inflatable obstacles is at Shawnee Mission Park from 7:30 a.m. to 12:30 p.m. Supports the Johnson County Parks and Recreation Department; http://www.airituprun.com.
Coming up
GOLF CLINIC: Instructor Chuck Evans will play host to a free informational golf clinic at 9 a.m. on June 23 at Tiffany Greens. The goal is to introduce golfers to a program that teaches how to hit every shot pure and with a predictable ball flight.
DOUBLE ROAD RACE: Billed as the only road race with a halftime, competitors run a 10K race, take a break and then run a 5K. It’s June 30 at Corporate Woods. http://www.doubleroadraceoverlandpark.com/
ATHLETICS REUNION: The KC Baseball Historical Society will play host to its annual reunion of the Kansas City Athletics on July 5-6. A reunion banquet with players and silent auction will be held July 5 at the Town Pavilion, cost is $65 per attendee. More than 30 former Kansas City A’s players are expected to attend, including Blue Moon Odom, Jerry Lumpe, Norm Siebern, Danny Cater, Jim Gosger, Phil Roof, Lew Krausse, Ray Herbert and broadcaster Monte Moore. For information, go to www.kansascitybaseballhistoricalsociety.com.
A Lower Paxton Township charity was ranked number 11 in an investigative report published by the Tampa Bay Times called “America’s Worst Charities.” Two other central Pennsylvania charities also were highlighted in a list of the 50 “worst” charities, although one said it was “unjustly” included in the article and issued a vigorous rebuttal.
The report, also carried by CNN, alleges the 50 highlighted charities spend most of the money they raise on professional fundraisers, with only a small fraction going toward their charity work. The report was done in collaboration with the non-profit Center for Investigative Reporting.
According to the report, Lower Paxton-based Children’s Cancer Recovery Foundation used professional fundraisers to raise $34.7 million during the past ten years, with $27.6 million being paid to the fundraisers, and less than one percent going to direct cash aid.
View full sizeGreg Anderson shown in a photo taken more than a decade ago while he was living in the Harrisburg area.
Children’s Cancer Recovery Foundation was the subject of an April 26 story on PennLive. The PennLive story had been prompted by an investigation by The Chronicle of Philanthropy, published in February, which concluded that most of the money it raises goes to fundraising businesses rather than programs for children with cancer.
The chronicle concluded that no more than 15 percent of the money raised by the Children’s Cancer Recovery Foundation goes to its primary mission of providing toys, financial assistance and camp scholarships to children with cancer.
In an emailed response to PennLive in April, Greg Anderson, who founded the Children’s Cancer Recovery Foundation, said 81.4 percent of its 2011 expenditures went to such programs. He stressed the foundation has never run afoul of the Internal Revenue Service or any state agency.
Watchdogs say 65 percent to 75 percent, if not more, of the money raised by a charity should go toward actual charitable work.
The Chronicle of Philanthropy had concluded the Children’s Cancer Recovery Foundation had spent about $3.8 million on businesses that perform marketing and mailings in 2011. According to forms filed with the IRS, the foundation spent $682,099 – less then one-fifth the amount spent on fundraising – on its main mission of providing toys, financial aid and camp scholarships to children with cancer.
Anderson told PennLive that his organization combines fundraising with messages designed to educate people about topics such as preventing cancer, thereby furthering its mission even while raising money. He stressed this is allowed under an accounting principle known “joint-costs allocation.”
The chronicle, however, portrayed joint-costs allocation as a practice that’s controversial among watchdogs and which can make fundraising costs look lower than they actually are, and make it hard for donors to know exactly how their donation is being spent.
The chronicle also raised questions concerning $7.1 million in medications donated to the foundation in 2011. The foundation said it donated the medications to other charities that distributed them in Ghana and Honduras; it lists their value as both as a donation and part of the value of its charitable programs.
In May, however, Anderson said his organization would amend the value of its charitable work after a charity called World Help, which Anderson’s organization partnered with to deliver drugs to Ghana, said it had greatly exaggerated the value of medications shipped to impoverished countries.
Anderson didn’t immediately respond to an email sent Friday seeking comment on the Tampa Bay Times report.
Two other central Pennsylvania charities also made the list: Survivors and Victims Empowered, based in the Lancaster area was ranked 42, and American Foundation for Children With Aids, based in Lower Paxton Township, was ranked 46.
The AFCA issued a statement in which it said it was “unjustly” included in the article.
“We are acutely aware of the damaging impact this type of negative press will have on our organization. Losing even a single donor means those children we support will not receive the life-saving medicines they so desperately need,” the organization said. “The article was based on historical data that is no longer applicable to AFCA. It made several blatantly incorrect statements about our mission and how we conduct our work. It also focused on a single source of data and failed to consider the overall positive impact of AFCA as an organization.”
It further said, “We appealed to the reporters to dig deeper, to correct their inaccurate statements, to look at more comprehensive and current data points and to give credit to AFCA’s organizational efficiency and effectiveness. We also asked to review their data or analysis methods prior to release of the article in order to rebut any inaccuracies. However, they declined to do so. AFCA takes great pride in being a committed financial steward of every dollar donated, directing a remarkably high percentage of the financial and goods-in-kind resources it receives to improve the lives of the children our organization serves. Every year since 2005, we have consistently sent 92% or more of all donations we receive to our African partners who serve the children in our programs.”
Survivors and Victims Empowered didn’t immediately responded to phone and email messages on Sunday afternoon.
Anderson, the Children’s Cancer Recovery Foundation founder, is a one-time Harrisburg area resident who no longer lives in the area.
The author of 14 books and DVDS focused on surviving and preventing cancer, he has said he nearly died of late state lung cancer in 1984. He said he survived as the result of prayer, positive thinking and good nutrition.
The Tampa Bay Times wrote that Anderson “has created an international network of eight charities, stretching from Harrisburg, Pa., to Berlin, Germany. His daughter, Erica Harvey, and wife, Linda Anderson, are both officers at two of the related cancer charities. Children’s Cancer Recovery does not pay Greg Anderson. But he was paid more than $170,000 in 2011 as president of one of his other charities, Cancer Recovery Foundation International.”
Note: This story was revised to include a response from the American Foundation for Children With Aids.