About Us
In 1982, to battle neurofibromatosis and to serve the
increasing number of men, women, and children in Illinois
suffering with this disorder, a statewide, nonprofit, voluntary
organization was formed.
Illinois/Midwest NF, Inc. has grown rapidly in size and scope
since its inception. We are dependent on funds raised by
special events, foundations, and individual donations to
survive. As the number of Americans afflicted with NF grows
and is recognized, so does our responsibility to them.
Our Mission includes:
- providing educational and support programs to
individuals and families with NF
- educating the general public and health care
professionals about NF
- raising funds to support NF programs
- supporting NF research through funding and
legislation
We carry out our mission by:
- hosting two educational meetings per year, bringing
in top NF experts in the country to inform individuals
and families with Neurofibromatosis
- providing high quality newsletters with current
research updates as well as to keep our over 3000
members informed about the functions of this
chapter
- holding several special events to raise funds and
awareness
- working closely with national Neurofibromatosis
organizations dedicated to federal advocacy for NF
research as well as mentoring new statewide NF
organizations.
Illinois/Midwest NF, Inc.
Illinois/Midwest Neurofibromatosis, Inc. is a non profit
501(c)(3) organization originally incorporated as
Illinois Neurofibromatosis Foundation on December
31, 1981 by a group of people who were in some way
affected by the genetic disorder known as
neurofibromatosis (NF). The articles of incorporation
were amended to Illinois Neurofibromatosis, Inc. on
October 1, 1988.
Illinois/Midwest NF, Inc. has a loose affiliation with a
national organization, Neurofibromatosis, Inc. The
National NF, Inc. office is located in Lanham, Maryland.
The founders of Illinois/Midwest NF, Inc. had been
members of the National Neurofibromatosis
Foundation (NNFF). A dispute over new bylaws, which
changed the disbursement of funds raised by local
chapters, caused a nation-wide split, with eleven
chapters leaving NNFF and forming NF, Inc. Among
the discontent chapters, the Texas, Massachusetts,
and Illinois Chapters have been designated as the
"fund-raising chapters," while the Mid-Atlantic Chapter
has been active in advocacy efforts in Washington,
D.C. The remaining chapters focus primarily on
education and family support at their local levels.
NNFF continues to operate in Illinois. Consequently,
there are two NF organizations within the state. The
two groups are in amicable contact with one another.
History
