| 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, an 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.
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, an 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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