In times of need, we find ourselves seeking support in the community around us. We “look for the helpers” in friends, family, coworkers, peers and more. The NF Network is proud to be the helpers in the NF community, and we are grateful for the many helpers in the NF Network family.

Our helpers are spread all across the country! Whether they are hosting community events or leading the NF Network Board, our helpers make a difference in the NF community every day. Meet some of the many NF Network helpers:

 

Rosemary Anderson

Rosemary Anderson has been involved with the local Neurofibromatosis Michigan organization since 1985, the year after her son was diagnosed with NF1. She has been an active member of the NF Network for the past 20 years, serving on the Board of Directors and remaining active in local and national NF communities. "I am thankful for the many wonderful friendships I've made within the NF Network Family and for the dedication of the staff and advocates through good times and hard. I look forward eagerly to the time when we can all be safely together.”

 

Diana Flahive

Diana Flahive is Neurofibromatosis Northeast’s Director of Operations and Events and an NF Network Board Member. "As a member of the NF Network Board of Directors, I have the unique opportunity of raising awareness about a rare disorder that affects thousands. As a mom of two young children, I am proud and thankful that they can watch me in a role that gives back to those in need, an important value that I want to instill in them."

 

Sharon Loftspring

Sharon is a mother of a daughter, Elana, who has NF1. She has served on the NF Network Board for several years, as well as the Board of NF Central Plains. She and Elana participate in the NF Network’s advocacy efforts in Washington, D.C. and represent several states in their congressional meetings. "The NF Network has been my support system since Elana was first diagnosed at age 3. She is now 23, and the Network has become an integral part of our family’s life, not just in terms of support. It has provided us with lasting friendships, the means to raise our voice for research, and a path toward hope."

 

John Manth

John Manth is the NF2 representative on the Board of Directors and currently serves as the NF Network Board Vice President. John’s daughter, Leah, has NF2 and he is dedicated to promoting research to find the cure. Along with his family, he travels to Capitol Hill annually with the NF Network Advocacy Program to advocate for federally funded research. "I am thankful for all the NF organizations who are working tirelessly to advocate for federal funding for NF research." John also sits on the Board of Neurofibromatosis Northeast and NF2 BioSolutions. The Manth family and friends have raised a half million dollars for NF2 research and continue to be a beacon of light and hope in our NF community.

 

Michael Sheedy

Michael Sheedy became the President of Neurofibromatosis Arizona in 1995 when his daughter was diagnosed with NF1. He has also served on our Board of Directors since 1998, helping "keep hope alive" for the thousands living with NF. During his time spent with the NF Network, the Sheedy family is most thankful for one thing: "We are thankful for Family who are Friends and Friends who are Family!"

 

Keisha Garrick

Keisha is inspired by her son, Noah, who has NF1. After traveling hours to an NF event so her son could meet other children with NF, Keisha brought the fight back home with her and is raising NF awareness in her own community. "I am thankful for a very handsome son and our life. We thank God for waking up every morning! NF has truly changed our life through a lot of his health challenges, but we have kept our Faith and keep going."

 

Jenn Krawchyk

Jenn serves as our #NFStrong event chair in Boardman, OH and is inspired by her son, Kyle. Over the past 8 years, our community has only grown thanks to the light that shines in Jenn! "Our oldest son Kyle has NF1. We are thankful for our family, friends, the NF Network, and everyone who is aiding in helping to find a cure for NF for our fellow families and fighters. We are also beyond thankful for ALL of Kyle’s NF Warriors and their support of our boy!"

 

Melanie Leach

Melanie has been a part of the NF Network family for over 8 years, serving as our event chair in Orlando, FL and representing the state of Florida in Washington, D.C. Melanie is inspired by her son, Zac, who has NF1. "We are thankful for bringing people together, for support and for sharing experiences. We have been a part of the Network for eight years now, building connections that we hope make everyone's life with neurofibromatosis just a little better."

 

Jill Meyer and Shelly Chavez

Jill and Shelly have been a part of the NF Network family for years, leading as our #NFStrong event chairs in Kansas City, MO, serving on the board of NF Central Plains, and advocating with the NF Network Advocacy Program in Washington, D.C. They are inspired by their daughter Riley who has NF1. "I am thankful for my family and the experiences we share. I am also thankful for the NF Network and NF Central Plains; they help provide resources and education. This brings peace to our minds and hope for our hearts."

 

Carrie Wylie

Carrie has been a part of the NF Network family for over 10 years and currently leads our #NFStrong events in Memphis, TN. Carrie leads with a heart of gold, inspired by her 18-year-old daughter Kaitlyn who has NF1. "I am thankful for our strong family and friends that support Kaitlyn through her daily fight against NF pain. The power of prayer and love give her stretch and inspiration to get through the tough days."

 

Kim Bischoff

Kim is the Executive Director of the NF Network and has been on the NF journey for over 30 years, inspired by her daughter with NF1. In addition to her role as Executive Director, Kim sits on the CDMRP (Congressionally Directed Medical Research Programs) panel as a consumer and has done both peer review and programmatic review for the last 9 years. There are numerous NF specialists and NF researchers who continue making great strides in treating their patients and learning more about NF. This was an exciting year with the announcement of the first FDA approved treatment for pediatric NF patients, selumetinib. Kim continues working closely with AstraZeneca keeping abreast of how their research is advancing with adults. "I am grateful to the NF community who continues to amaze me every day. I am inspired by how dedicated and passionate the NF families, NF physicians and NF advocates are and how they come together to support one another. I am truly grateful to all the people I have met along this NF journey.”

 

We thank each of our NF helpers and all of you who continue to support the NF Network! Together, we are making a difference in the lives of thousands and continue our work towards better treatments and a cure for neurofibromatosis.