Behind every clinical trial is a team that keeps it running day to day. For 45 years, NF Midwest has supported research into the many complications of NF1, NF2-related schwannomatosis, and other forms of schwannomatosis. Today, that investment is paying off close to home. NF clinical trials are happening right here in the Midwest, and patients are benefiting.
Recently, we visited the University of Chicago Clinic and met with the program’s Co-Directors, Dr. James Tonsgard and Dr. Shawn Damodharan. We also visited with Cynthia MacKenzie, the clinical trial Research Coordinator and with clinic nurse, Deb Ruckman. Both have been treating patients with NF for decades.
The University of Chicago Medicine NF Program is one of the leading sites for NF clinical trials. When the program told us they needed more support for these roles, NF Midwest stepped in to fill the gap, and we couldn’t have done it without you. Thanks to our generous donors, we are funding a 3-year grant commitment to support their efforts.
The University of Chicago clinic has cared for over 2,400 people with NF. Because the staff knows these patients well, they are in a strong position to spot people who may qualify for a clinical trial and help them learn how to join.
That takes time, planning, and skilled staff. Our grant helps cover tasks like:
- Analyzing over four decades of data on how NF patients are affected
- Maintaining a database of longitudinal information on the NF population
- Keeping the careful records researchers rely on
- Finding patients who may be a good fit for a study
- Scheduling study visits and checking in afterward
Most people never see this work, but trials can’t happen without them. Your gifts help fund the people who keep research moving.
Not long ago, there were no approved medicines for NF1 plexiform neurofibromas. Now there are two, and there are other clinical trials bringing hope. That changed because patients and families stepped forward to join clinical trials. Their choice opened the door to treatments that are helping people with NF today, and new trials are building that progress.
Clinical trials are what keep NF research moving. About 12 years ago, I took part in a drug trial through my team at the University of Chicago, and I found it really rewarding. All research could help the whole NF community down the road. Without people taking part, we’d be nowhere.
– Karissa Haberkamp
Interested in clinical trials? Visit clinicaltrials.gov or contact your local clinic.
When you give to NF Midwest, you help connect patients with research and bring us closer to better treatment options for NF1, NF2-related schwannomatosis, and other forms of schwannomatosis
Thank you for being part of that progress!
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