Celebrating 35 Years

Participate in Research

To move our knowledge of NF forward many people are needed to participate in research.

Help Change Your Future

There are many ways to participate in neurofibromatosis research. Some may be more invasive such as a clinical trial testing a medication. Some may simply involve answering questions or letting a researcher examine you and follow your case. Some research may provide the benefit of extra care and expertise and may provide vital testing such as MRIs at no cost to the patient. All research advances our understanding of neurofibromatosis to lead to better treatments, more knowledge of how a patient may be affected, and to an eventual cure.

How can I participate in research?

  • Go to clinicaltrials.gov and research the various clinical trials for neurofibromatosis or schwannomatosis.
  • Register at researchmatch.org and you will be contacted if there is ever a trial that you might be eligible for.
  • Tell your NF doctor that you are interested in learning more about clinical trials or research studies.
  • Keep abreast of opportunities that may be listed on this site or through social media.

Why should I participate in research?

  • Participation in research advances our understanding of neurofibromatosis and schwannomatosis to better understand the course of the disorder.
  • Of course, research leads to better treatments and hopefully an eventual cure.
  • Enrolling in a study might give you or your child a chance to see extra doctors or find out more facts about you or your child’s condition. A study may also be able to put you in touch with families going through what you are going through.
  • A clinical study may offer closer monitoring or additional testing for you or your child, which may not be part of regular care.

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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