NF Center 2020, Volume 2 Newsletter Published

Check out the NF Center 2020, Volume 2 newsletter (pdf) to read about new research on NF1 brain tumors and human brain cells, learn about a new therapy treatment for children with NF1, and read updates on patient engagement.

Additionally, learn about:

  • The Advocate of Hope Award honoring Dr. Gutmann
  • Our newest Patient Spotlight article

If you haven’t already done so, be sure to also take a look at our previous issues of the NF Center newsletter for additional NF-related research updates and patient spotlights!

Patient Spotlight: Daniel

At six months of age, Daniel Crum was brought to the Washington University NF Clinical Program at St. Louis Children’s Hospital and received a diagnosis of Neurofibromatosis type 1 (NF1). Although both his father and grandfather had signs of NF1, they had gone without a formal diagnosis, and the news came as a shock. The Crum family immediately rallied around Daniel, and began seeing NF specialist, Dr. David H. Gutmann, every six months.

At two and half, Daniel’s parents noticed that he had a lazy eye – it was then that he was diagnosed with a brain tumor called an optic pathway gliomas (OPG). Through many years of chemotherapy and incredible difficulties, Daniel stayed strong, upbeat, and playful. His parents love that he never stopped playing and loving basketball, even in the midst of his treatments. At nine years old, his tumor stopped growing, reducing Daniel’s NF checkups to once a year. Although this was an indescribably difficult time for Daniel and his family, they made it through with their faith and the support of their community. They now try to help everyone they meet better understand NF1 and those who struggle with it.

In spite of his diagnosis, Daniel thrived in middle and high school. Capitalizing on his love of sports, Daniel became involved in his school’s basketball, football and golf teams. Even though his vision was severely impaired, Daniel played golf for all four years of high school, winning an award for being the first blind student to do so. By the time he graduated, he had won two more awards – he was presented with the Rosemary Zander Award for his ability to go above and beyond what was expected of him, and his class of 2013 began a new award in his name, honoring his dedication and strength, called the Crum Perseverance Award.

After graduation, Daniel brought that love of sportsmanship and athletics to his current job at the Enterprise Center. There, he works in Press Dining to feed the numerous reporters, sports writers, cameramen, and retired athletes who come through the center.

Now 24 years old, Daniel absolutely loves his job and excels at every aspect of it. He gets to know each of his customers on a first name basis, and frequently works in other departments when they need extra help. Recently, Daniel got to see and touch the Stanley Cup at an event for season ticket holders, which was incredibly exciting. His parents are so proud of everything he has accomplished, most importantly, his perseverance and fortitude in pursuing his dreams.