Tracy Wirtanen and her family members’ lives were forever changed when her son Sami was 4½ years old. That was when he was diagnosed with Neurofibromatosis (NF). She grew increasingly aware of the uncertainty her family was facing and decided that they needed to be a part of the solution. Her family and friends immediately started raising money for research, and she went on to become the CEO and Founder of the Littlest Tumor Foundation (LTF), whose mission is to increase understanding of NF, empower affected families, and advance research of preventative therapies.
Tracy learned about the Neurofibromatosis Research Program (NFRP) though a fellow NF parent and NF community leader. Now, the LTF advocates for the NFRP and CDMRP. Tracy is proud of what the LTF has accomplished, particularly their contribution to the NF advocacy effort, which has resulted in her state of Wisconsin having the strongest bi-partisan support for NF research in the nation. In addition, the LTF collaborates with other NF organizations to advance funding and research.
Tracy became a consumer reviewer for the NFRP in 2015. Describing her experience with the review process, she stated, “It has made me even more passionate about the NFRP! It is so well run. It has been a highlight in my life being part of such critical panels.” She feels that there is a need for academic institutions, the government, private entities, and patient organizations all being involved in moving towards a treatment for NF, and that the NFRP is a crucial part of this movement.
When Tracy is not running her nonprofit organization or participating in the review process for the NFRP, she is spending time with her children. She enjoys watching their soccer games and ski races, as well as running, hiking, and traveling. Of her time as a reviewer with the NFRP, she said, “It is a wonderful experience that inspires great hope in future treatments.” Tracy and her friends and family members are striving to be a part of the solution, and the NFRP is very thankful for their efforts.
Last updated Monday, January 3, 2022