Celebrating 35 Years

More Resources

Explore for extra resources on insurance, disabilities, Spanish material and more.

NF Midwest Resources

We are constantly looking for resources and material to help our NF community in any way. If you come across a resource that you have found helpful please be sure to share it with us.

Resources for Insurance and Financial Help for Health Care

Healthcare.gov
The best place to start to find insurance and health care coverage.

Health Resources and Services Administration Data Warehouse
US Department of Health & Human Services repository for HRSA data enabling users to gather relevant and meaningful information about health care programs in their area.

NORD Medical Assistance Programs
May provide financial assistance for  life-saving or life-sustaining care.

Covering Kids & Families
A national program working to enroll children and adults in low cost or free health care coverage programs.

United Health Care Children’s Foundation
medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.

The First Hand Foundation
Provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.

NeedyMeds.org
Find help with the cost of medicine

Disability Assistance

Applying for Disability Benefits with Neurofibromatosis
by Ram Meyyappan

US Government Site on Disability
disability.gov

National Disabilities Rights Network

Job Accommodation Network

Family Resource Center on Disabilities (FRCD)
Chicago’s Metropolitan Area Parent Training and Information Center serving the counties of Cook, DuPage, Grundy, Kane, Kendall, Lake, McHenry,  and Will.

Wisconsin Family Assistance Center for Education, Training and Support (WI FACETS)
Provides opportunities that enhance the quality of life for children and adults with disabilities and their families in Wisconsin.

Pacer Center
Champions for Children with Disabilities – Though services are intended for families in Minnesota there are many helpful resources on this site – including videos, publications, online workshops and more.

AbleData
provides reviews on products to aid the disabled. They also provide information on where to get the products.

Potential income tax benefits for families with special needs children 

ASK (Access for Special Kids) Resource Center (IOWA)
ASK serves as the state of Iowa’s parent training and information center for families of children with disabilities.

Recursos en Español

La neurofibromatosis tipo 1
de Hospitales y Clínicas de Minnesota para niños

Amigos Con NF
de NF California

Los fundamentos de la Neurofibromatosis
Seminario de grabación por el Dr. Maria Acosta

Neurofibromatosis
La información sobre la neurofibromatosis del Instituto Nacional de Trastorno Neurológicos y Accidentes Cerebrovasculares

Genetics Info

Help Me Understand Genetics
U.S. National Library of Medicine

Bullying

StopBullying.gov
StopBullying.gov provides information from various government agencies on what bullying is, what cyberbullying is, who is at risk, and how you can prevent and respond to bullying.

PACER’S National Bullying Prevention Center
This is a GREAT resource center for adults and kids.

Anti-Bullying Webinar
by the NF Network March 6, 2013

Generations Against Bullying (GABNOW)
Partnered with Children’s Hospital of Wisconsin to provide communities with programs and resources to promote a culture of upstanders. GABNOW seeks to awaken our children and communities to the importance of love, acceptance, and cooperation needed to reduce the bullying epidemic.

 

 

People Are Talking

Today I had the chance to get together with a friend that I haven't seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed I have been and the blessing that has been NF Midwest. My family's lives have been tremendously impacted by the NF Midwest family.  That's truly what they have become to us-family.  Earlier this spring, we had the opportunity to go to the NF Midwest office in St. Charles, IL.  I'm not quite sure what I expected, but there were only three people running this organization that serves NF families in six states! Little did I realize that this visit would lead to the biggest adventure in all of my son 9 years, as he got to go to NF camp in Virginia. Not a day goes by since he came home that camp isn't mentioned. Even more remarkable than that is that those campers’ experiences were made possible by people who just want to make a difference. Making positive differences in the lives of people with NF is ultimately what NF Midwest represents to me. Of course, their contributions to research are extraordinary, and our family has seen first-hand how wonderful camp can be, but I am just as moved when I see a simple message from the staff at NF Midwest offering thoughts and support for someone who is scared and anxious about a test result. The uncertainties of NF can be too much for people to bear and can leave them feeling powerless (yes, I am speaking from personal experience). Our participation in NF Midwest has helped us take some of that power back, and has given us hope.

- NFmom

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