Sera has a tumor that runs the length of her arm, all the way from her hand up to her shoulder. This inoperable tumor has caused her extreme pain as well as disfigurement. Diagnosed with Neurofibromatosis (NF) Type 1, fifteen-year-old Sera has had to endure many trials in her young life. However, Sera is now in the midst of a trial that has the potential to give hope to the entire NF community. Eight months ago, she started participating in a clinical trial at the University of Chicago for the drug, Binimentinib. Within a few months, Sera was able to go off all her pain medication and at the last check, there was a 17% decrease in the size of the tumor.
NF Midwest has contributing funds to support NF research for the last 35 years, yet it is only in the last several years that these research trials have been able to test the effectiveness of actual drugs on these complicated tumors caused by NF. Research has always been a part of our mission, but we have found that there is so much more to funding research than just drugs and tests. Sometimes, patients can’t afford to travel the testing sites, or perhaps the patient’s insurance doesn’t cover all the tests that are required. There are also administrative supports that are needed at the clinic sites, such as research coordinators. We want to broaden our mission to help make these trials a success.
The NF community finds itself in a very exciting time as there are 12 clinics participating in clinical trials in IL, IN, KY, MO, IA, and WI. We need to support those clinical trial sites and their patients as they are making the difference for the whole NF community. As we approach the season of giving, please help us expand our mission by making your contribution to NF Midwest. NF Midwest is looking to raise $50,000 by the end of the year! This is a LOFTY goal for us, but with the help of our community we can do it!
Donate now at NF Midwest or if you are able to donate on Facebook at exactly 7 AM CST on Giving Tuesday, December 3rd time your donation may be doubled.
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