When it comes to making a difference in the
hemophilia community Bob Robinson, Director of the Hemophilia
Foundation of Illinois, deserves our attention and applause.
With a professional career that has spanned 20 years providing
marketing and fundraising support to the Illinois and Chicago
not-for-profit community, Bob has a Masters degree from the
University of Chicago - School of Social Services Administration,
with an emphasis in not-for-profit management. With a kind spirit,
determined intellect, and somewhat unusual sense of humor, Bob
seeks to support and develop organizations that focus on empowering
individuals to be self-sufficient and self-directed by helping
them build strong support systems. I have been fortunate enough
to witness Bob’s work here in the Chicago area and recently
had the opportunity to discuss his work with the Hemophilia
Foundation of Illinois:
Lisa Miller: Having been involved in other not-for-profit
organizations, what drew you to the hemophilia community?
Bob Robinson: In the late 80s
and early 90s, I was working to help develop programs for women
and children living with HIV. I was part of a collaboration
that was establishing a camping experience for HIV families.
The hemophilia community, and in particular our Executive Director
of 13 years Judy Buchner, supported this effort and really acted
as a consultant because of the years of experience HFI has had
with camping. I developed such a bond with Judy and my heart
was really grabbed by the fact that people were living with
HIV because of the problems with our blood supply. This was
the door. Judy encouraged me to enter and I have never found
the need to turn around.
LM: Your devotion and commitment
to the hemophilia community is clearly evident, but where does
that dedication come from and why?
BR: I come from a small farming
community in Pennsylvania. I spent most of my adolescent years
thinking about how quickly I would be able to leave and move
to the city. During my early adulthood, I grieved the loss of
my family and the tight connections that my rural upbringing
offered. The bleeding disorder community from the beginning
has welcomed me as a member and provided me with a strong replacement
for this loss. I have been able to grow and develop my professional
skills in pursuit of better lives for the community, while at
the same time being offered the opportunity to develop lifelong
friendships and connections with truly wonderful and amazing
people.
It is one of my mottos for anyone involved in
a community-based organization – rather as a staff or
as a volunteer – that you need to be able to get as much
as you can give. This has been true for me every day over the
past 15 plus years of involvement with the Hemophilia Foundation
of Illinois (HFI).
LM: Can you give me a little
background information on HFI?
BR: HFI has been part of the
national bleeding disorder community since 1949. We have a strong
organization that focuses on providing education, advocacy,
and coordination services to the entire Illinois bleeding disorder
community. This previous wording is important to clarify. While
the organization was founded for people with hemophilia and
has a long history of supporting people with hemophilia, over
the past 10 years we have opened our arms to all people with
bleeding disorders. This match in ideals and desired outcomes
has not weakened our objectives; it has made us stronger and
will continue to help us reach greater levels for all as we
move forward.
LM: What changes has your presence
brought to the Foundation?
BR: Key to my coming to the
Foundation as a paid staff member, from that as a long-time
volunteer, was my focus on finance, fundraising, and marketing.
Our organization went through a down period several years ago.
When I came on-board, we had serious financial issues and our
reputation was in question in many areas of our community. I
have worked over the past two years with the Board of Directors
and many community members to first stabilize HFI’s finances.
I am happy to report that we have been able to do this successfully
– we have ended each of the last two fiscal years in the
black and continue to develop stable sources of support for
our future.
The Board and I are now focused on the next
phase in our re-development process – the growth and stabilization
of our programming. While we have made in-roads to the re-establishment
of our education and advocacy programs and key enhancements
to such linchpin offerings like camp, we all feel that there
needs to be a thoughtful and proactive approach to everything
we seek to accomplish. We are working to develop a strategic
vision that mirrors the needs of our young families, our transitioning
teens and women and men with bleeding disorders. I am very excited
about this venture as I think many other people will be also.
LM: What are your goals for
the Hemophilia Foundation of Illinois?
BR: My goal for HFI is for
every person in Illinois to recognize that this organization
is theirs. It is theirs to make into the best support organization
to meet the combined needs of the bleeding disorder community.
In the immortal words of President John F. Kennedy, “It
is not what my country can do for me. It is what I can do for
my country.” Change the word “country” to
“foundation” and this is the ideal that I strive
for when I work each day to get everyone involved. I have yet
to come across anyone whose needs and concerns are theirs alone.
I have always been able to take particular problems and relate
them to others that I have already faced with another person
or family with a bleeding disorder. This coming together will
make us stronger: not only in our individual lives and in our
individual outcomes, but long-term in the quality of life for
everyone with bleeding disorders.
We are living in a time where we have good safe
products that allow children and adults to live very strong,
normal lives. This security is on the verge of being severely
threatened. The economics of bleeding disorders has made our
community the target of providers and payors. It is critical
that we all take this call to action to come together seriously,
or we may wake up one morning and find that this time of good
is over and we are not in any position to change it.
With a community poised on the brink of major
change, it is through the leadership of such individuals as
Bob Robinson that we find ourselves navigating. We applaud his
dedication and commitment to those affected with a bleeding
disorder and look forward to his future endeavors with HFI.
