| About NF Midwest |
Neurofibromatosis Midwest began in 1982 around a kitchen table by
families affected by the genetic disorder known as Neurofibromatosis
(NF). Looking for support for themselves and others with NF, for
strength in knowledge and for hope in the promise of research they
began the process of forming one of the first NF advocacy
organizations in the country. In 1988 this grassroots organization was
incorporated as a non profit 501(c)(3) called Illinois Neurofibromatosis,
Inc. In recent years the name Neurofibromatosis Midwest was adopted
to better describe the area we serve. We are affiliated with the national
organization Neurofibromatosis, Inc.
Today NF Midwest continues its mission to support those affected by
Neurofibromatosis, to create awareness and to find a treatment and the
cure for Neurofibromatosis by promoting scientific research.
We offer many avenues of support and education for NF affected
families and individuals. This includes phone support for such things as
clinic information or for an understanding ear. We also hold various
events for NF affected individuals or their loved ones to meet and share
experiences and to learn more about NF and NF research. This includes
our annual symposium held every October, an "Ask the Doctors"
opportunity in April, Great Steps Walks in the summer and more. We
also have a Parent's Action Committee, a NF Action Group that
addresses adult issues and an NF-2 Action Group.
To promote public education and awareness NF Midwest displays at
various medical related conferences and at whatever opportunities open
to us.
To improve treatments and promote research we provide direct
research grants and support NF clinics. We are also members of the
advocacy group, The National NF Coalition. In partnership with the
Coalition, we work with congressional representatives on both a local
and national level to encourage continued and increased federal funding
of NF research.
NF Midwest raises 70% of our funds at events, we receive no direct
government support. We rely on corporations, foundations and
individuals.
families affected by the genetic disorder known as Neurofibromatosis
(NF). Looking for support for themselves and others with NF, for
strength in knowledge and for hope in the promise of research they
began the process of forming one of the first NF advocacy
organizations in the country. In 1988 this grassroots organization was
incorporated as a non profit 501(c)(3) called Illinois Neurofibromatosis,
Inc. In recent years the name Neurofibromatosis Midwest was adopted
to better describe the area we serve. We are affiliated with the national
organization Neurofibromatosis, Inc.
Today NF Midwest continues its mission to support those affected by
Neurofibromatosis, to create awareness and to find a treatment and the
cure for Neurofibromatosis by promoting scientific research.
We offer many avenues of support and education for NF affected
families and individuals. This includes phone support for such things as
clinic information or for an understanding ear. We also hold various
events for NF affected individuals or their loved ones to meet and share
experiences and to learn more about NF and NF research. This includes
our annual symposium held every October, an "Ask the Doctors"
opportunity in April, Great Steps Walks in the summer and more. We
also have a Parent's Action Committee, a NF Action Group that
addresses adult issues and an NF-2 Action Group.
To promote public education and awareness NF Midwest displays at
various medical related conferences and at whatever opportunities open
to us.
To improve treatments and promote research we provide direct
research grants and support NF clinics. We are also members of the
advocacy group, The National NF Coalition. In partnership with the
Coalition, we work with congressional representatives on both a local
and national level to encourage continued and increased federal funding
of NF research.
NF Midwest raises 70% of our funds at events, we receive no direct
government support. We rely on corporations, foundations and
individuals.
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