Corrections or additions?
This article by Kathleen McGinn Spring was prepared for the
February 6, 2002 edition of U.S. 1 Newspaper. All rights reserved.
Building a Non-Profit From the Ground Up
Roxanne Black started a non-profit from her Rutgers
dorm room. A 17-year-old freshman, she had been diagnosed with lupus
two years before. The disease was destroying her kidneys. On dialysis
and on a long waiting list for a kidney donation, she was miserable
and frightened, and thought it would help if she could talk to someone
who had been through the same ordeal.
Thirteen years later, Black is president of Friends’ Health Connection
(www.friendshealthconnection.org), a New Brunswick-based non-profit
that matches individuals suffering from a disease with someone who
has been through a similar experience. Matches are made after
characteristics of two people who contact the organization. Most often
each is suffering from a chronic disease, but individuals facing an
operation or disabled because of an accident also call or write in
seeking a buddy. The organization has seven employees, a $500,000
annual budget, and partnerships with 43 New Jersey hospitals.
Branching out, and seeking an additional funding mechanism, Friends’
Health Connection began a lecture series that features big name
addressing wellness topics. Recently John Gray, author of Mars and
Venus in the Workplace, spoke on how to succeed in business by
and increasing cooperation between men and women.
With no money, and no influential friends or family members, Black
started her non-profit from scratch. "I never imagined I would
be doing this as a job," Black says. "I never expected it
to grow as it has."
As a first step to publicize the concept of matching patients with
one another for their mutual benefit, Black hit the stacks in the
Rutgers library. The year was 1989, before computer databases took
most of the work out of information searches. In the library, she
found media directories, copied names and addresses of editors and
producers, and mailed letters describing her project.
The letter attracted interest at USA Today, which did a story. Other
media outlets, including CNN, Prevention magazine, and the Oprah
show, picked it up. Letters flooded in, and Black recruited volunteers
to come to her dorm room to help answer them. Seeking her first grant
money, she contacted Innovation Worthy Projects, a small South Jersey
non-profit. The organization gave her $750, which she used for stamps.
A communications major, Black took a course in fundraising in her
sophomore year. On a field trip to Johnson & Johnson’s headquarters,
she met the company’s vice president of corporate contributions, who
invited her to submit a proposal. When she told him she had no idea
how to write one, he introduced her to a fundraiser at the Rutgers
Foundation, the fundraising arm for Rutgers University, who taught
her the process and stayed in touch to mentor her.
Black says skill in grant writing is vital for any non-profit. Along
the way, she discovered, though, that it is not as difficult as she
once thought it was. "Really, it’s just a technical name,"
she says, "but it’s so basic." She has found the same to be
true for many of the core writing tasks that are so essential for
a non-profit. "A proposal," she says, "is just background,
where you want to go, and how you want to get there. It makes so much
sense. If I were on the giving side, it’s what I would want to
While Black learned how to apply to grant-making entities during her
sophomore year, she was not yet ready to start her non-profit in a
big way. Her Johnson & Johnson contact invited her to submit a
but she says she was too sick to do so. "I was on dialysis, in
and out of hospitals," she says. "I needed a transplant. I
wasn’t ready for a grant. I was not well enough to run an
During her senior year, Black got her transplant. One of her sisters,
who had been urging her to accept the gift of a kidney, persuaded
her to take it. The operation went well. She and her sister, a teacher
trainer in Newark, came through beautifully, and she graduated on
time. After the transplant, her health began to return. Lupus, she
explains, often destroys an organ, but abates after it has done so.
Meanwhile, Johnson & Johnson had kept in touch, even sending her
during her hospital stay. Feeling better, Black decided to apply to
the pharmaceutical’s foundation for a grant. But first, she had to
incorporate. Having no clue as to how to do so, she knew she needed
a lawyer. To find one who would do the work pro bono, she got a phone
book and started cold calling. "I called 30 lawyers who turned
me down," she says. "It was hard, but I was determined to
make it work. Each rejection made me more determined."
Finally, she found a lawyer, and he led her to an accountant, who
also agreed to waive his fees. Johnson & Johnson approved her
helped her to set up an office, and gave her a $20,000 grant. Drawing
no salary herself at first, Black hired her first employee, an
assistant, in 1994, two years after she graduated from college.
Media attention had gotten her non-profit rolling, and a grant had
gotten it some grounding, but Black says she soon learned she needed
to grow beyond both. The trouble with media attention, she says, is
that it generates a huge response all at once, but that the mail
to a dribble between articles or television news stories. There are
too many requests part of the time, and not enough at others. The
problem with grants, she says, is "every year you have to renew.
If you don’t get a grant, that aspect can’t continue." She needed
to even the peaks and valleys of media attention, and to add a funding
At that point, Black turned to Andrew Greene, CEO of the Robert Wood
Johnson Health Network. The two had met when she made a presentation
to the Robert Wood Johnson Foundation. Greene, who was treasurer of
the foundation before starting up the health network, sat in on the
presentation. "I was very favorably impressed with Roxanne as
a person and with her idea," Greene says. "There is a unique
charter that Roxanne is able to articulate and transmit. She started
the organization based on her own experience with a chronic illness.
She found herself in a difficult situation, and resolved to take on
the issue she faced."
Black won the grant from the foundation and used it to stabilize her
non-profit. In casting about for a stable source of revenue, she
Greene for advice. "I told her," says Greene, "from my
point of view, it would be helpful if you would do some work for us.
And I will pay you." What’s more, he told her, "when other
hospitals find out, they will be doing the same. They will not let
me own this."
And so Black began to enlist hospitals as partners.
Doctors, nurses, and social workers in partner hospitals —
Robert Wood Johnson at Hamilton Hospital and all the other hospitals
in the Robert Wood Johnson Health Network — tell patients they
are about to discharge about the Friends’ Health Connection. Black
says the appeal for hospitals is the opportunity to provide for
need for a sympathetic ear after they leave the hospital.
Says Greene, "This is not for everybody, but it absolutely does
help patients. People are delighted with it. They feel they are not
alone with a very difficult chronic disease, especially when it is
something that is not typical."
Hospitals pay $5,000 a year to be part of the Friends’ Health
and each is given the opportunity to host a noted speaker at one of
the group’s wellness lectures. The hospital splits the speaker’s fee
and is given a number of free tickets to all the lectures in the
The non-profit extends other benefits to its partners, including
on-site lectures and workshops, and Black says it is ready to reach
beyond New Jersey to expand its hospital network. New York will be
next, with other states to follow.
Adding new members through hospital referrals evens out the bursts
of activity following news stories, and revenue from partnership
and lecture admission charges lessens dependence on grants. Black
says a major goal is to lessen grant revenue to 30 percent of budget
within three years.
Black she has learned a great deal about the many facets of non-profit
management. In fact, one of the things that appeals to her about the
field is the need to continually learn. She discovered the importance
of a corporate name, for instance, when she added an 800 phone line
(800-483-7436). The organization had started life as `The Love
but Black thought that name’s many connotations might confuse callers.
"It sounded porno," she says. So she researched a new name,
made sure no one held rights to it, and developed a logo.
"Publicity, management, budget, PR: I’ve spent time focusing on
each," Black says. She has taken a number of one-day management
courses designed for non-profits, and is an active member of the
of Fundraising Executives. She has learned how to form a board of
directors, and how to recruit volunteers. She has found a helpful
website, www.NJServes.com, that joins corporate employees with
organizations that need volunteers.
She has refined the art of finding good employees, relying on a
that awards 50 points for skills and an equal number for character.
And most recently, she has been spending her time learning how to
operate Pitney Bowes mailing machines.
"We send out a newsletter to 50,000 health care providers and
18,000 homes four times a year," Black says. "We were doing
it manually. It took two weeks each time." So she obtained a grant
to buy a mailing machine. "For the past week, reps have been
us," she says. "You could have a whole career just on this
Pitney Bowes machine."
Another area Black had to learn was fundraising, but, perhaps
for the head of a growing non-profit, she doesn’t put a huge amount
of stock in it. Friends’ Health Connection does do a direct mail
and sells logo T-shirts and tote bags, but, says Black, "I don’t
think it’s right to spend so much time fundraising."
One event she doesn’t mind spending time on, however, is the dinner
at which her organization awards its annual Frances Black Humanitarian
Award in Health Care. This year, 200 people attended the event, which
honors outstanding doctors, nurses, and members of hospital support
staffs. The award is named for Black’s mother, a nurse and art
who died shortly after she received her kidney transplant.
"She was always teaching. There were always art supplies in the
house," Black says. "She influenced me so much. I incorporate
fun things — dance, music — in all the lectures."
Black says her father, Norman Black, was an influence too. He taught
math and business in New York City high schools, and most probably
is the source of what she calls her "innate business sense."
While she has mastered any number of business areas in launching and
running her non-profit, Black says there is one often-discussed aspect
of business whose importance she discounts. "There’s a lot of
talking about strategic planning," she says, "but life throws
curve balls." She learned this lesson young. "I had been
my whole life," she says. "I had been a rower. With lupus
you can’t even go out in the sun. I asked `Why me?’"
Black is healthy again, tethered to the hospital only by a schedule
of blood tests and check-ups. "I’m afraid to say this, because
I’m superstitious," she says, "but I can do anything. The
transplant was a gift of life." So many misconceptions surround
organ donations, she says. "When people learn I’ve had a
they ask me if I want to sit down, if I feel all right."
Black, a resident of East Brunswick, feels more than all right. She
dates frequently in a so-far-unsuccessful quest for "Mr.
took advanced aerobics classes in a gym for years before slacking
off recently, and devotes spare time to making stained glass and
She learned to throw pottery in New York City studios, and discovered
tremendous peace and enjoyment in the art. "It’s like
she says. "It’s my dream to have a wheel at home."
But no matter how well she is feeling now, Black has not forgotten
how it felt to be a teenager, growing up in Atlantic City and having
to keep out of the sun. She credits lessons learned in the depths
of illness, and on the road to recovery, for driving her to create
a successful non-profit.
"A lot of people get frustrated," she says. "If one thing
doesn’t work, they think it isn’t going to happen. You have to stay
— Kathleen McGinn Spring
Brunswick 08901. Roxanne Black, president. 732-249-9894; fax,
Corrections or additions?
This page is published by PrincetonInfo.com
— the web site for U.S. 1 Newspaper in Princeton, New Jersey.