Awareness & Education
We often say the NF is the most common disorder that you have never heard of. We believe that this is not only true for the general public, but for the families that are hearing of a diagnosis of Neurofibromatosis for the first time. Since our inception as an organization we have strived to provide education and awareness of this disorder in a variety of different ways to a) the general public b) families affected by NF c) practitioners in the state of Michigan.
The organization provides education in a variety of formats including:
1) Ann Mary Minnema Memorial Lecture Series for ongoing updates and news on Neurofibromatosis
2) Newsletters and updates
3) Our website and closed Facebook support group
4) “Walks” and other events
Each year, NF Michigan sends two delegates along with the national Neurofibromatosis Network to Washington DC in an effort to continue to secure Federal funding for Neurofibromatosis research. Since 1996, we have ensured Federal budgetary allotment for over $300 million for NF research. These funds come from two vehicles areas of government:
1) Congressionally Directed Medical Research Programs (CDMRP) Funded research led to the creation of the NF Clinical Trials Consortium a group of 21 clinical sites worldwide with an operational center to analyze data.
2) National Institutes of Health (NIH) We also ask NF advocates to urge their own Senators and Representatives to support NF research funding through the CDMRP and the NIH.