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Linda Manth's journey with neurofibromatosis (NF) began when her daughter Leah was diagnosed with NF2 at age seven. Leah had three very involved surgeries (one brain and two cervical spinal) in a short time frame and Linda wanted to reach out and find all the resources and support available for her daughter. It has been difficult for Linda to watch Leah endure surgeries, chemotherapy, pain, and the emotional anguish that comes with having NF. Although wishing her daughter did not have NF, she can now describe a number of positive experiences she has encountered along her journey.
Upon Leah's initial diagnosis in 2007, Linda and her husband came across Neurofibromatosis Northeast, an advocacy organization providing resources for NF patients and their families. They found NF Northeast to be very supportive and having all of the information they were looking for. Since finding NF Northeast, Linda was inspired to become an active advocate and supporter of the NF community in any way she could. She has served on the board at Advocure, a NF2-specific organization which provides up to date information about NF2, and enthusiastically participates in events, fundraisers, and symposia sponsored by NF Northeast, NF National, and the Children's Tumor Foundation.
Linda has since served as a consumer advocate for the Neurofibromatosis Research Program (NFRP) and reflects that her service has been incredibly rewarding. At first it was a bit daunting, she mentioned, but with the help of the supportive staff at the NFRP, things became manageable and she felt she was "kept well informed" while participating in the scientific review. Once meetings began, she felt that the panel of expert scientists and physicians were very supportive of her participation throughout and truly listened to her input as an advocate. She believes that researchers are committed to reducing the impact of NF in affected individuals but knows further research must continue to gain a full understanding of what is behind this devastating genetic disorder. Linda notes that through her participation as an advocate for the NFRP and her travels to Congress with her family to seek continued NFRP support, her journey has come full circle. In response to her experience with NFRP, she observes that "it was truly satisfying to be a part of the process" and "once the meetings were completed, I felt as if I had been part of something special, and was making a difference."
Linda still continues to learn and keep up with current events in between working as a Family Nurse Practitioner in an urgent care setting and a mother of 3 teenagers. In her moments of free time, Linda enjoys spending time at home with her family and enjoying the outdoors.
Last updated Thursday, May 26, 2022