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Webinar: Neurofibromatosis Parent Panel

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Neurofibromatosis Parent Panel
A Conversational Session with Parents of Children with Neurofibromatosis

Wednesday, September 16th, 2020 
7:00 pm CST/ 5:00 pm PST

RSVP

When parents first hear the word "neurofibromatosis," thousands of thoughts and questions begin to race through their heads. The NF Network is proud to present a Neurofibromatosis Parent Panel to facilitate an open discussion and answer your questions about neurofibromatosis.

As parents of the neurofibromatosis community, this parent panel brings together parents with different backgrounds of NF. Whether you are an NF2 parent, a multi-generational NF parent, or an NF1 parent, our panelists will provide insight, share tips and tricks, and talk about their experiences with their children with NF. Our panelists include:

 

Kim Bischoff, parent to adult child with NF1

Kim Bischoff from Northern Illinois is the Executive Director for the national Neurofibromatosis (NF) Network. She became involved with neurofibromatosis patient advocacy groups when her daughter, Jennifer, was born with NF1 in New Orleans, LA in 1983. Since that time, she has had many opportunities to speak with and organize events for families across the country affected by neurofibromatosis. An active NF advocate for federal funding of NF research, she serves as a consumer reviewer on the Programmatic Review Panel for the CDMRP NF Research Program - an external advisory body that makes funding recommendations on applications submitted to the program. Kim has used her passion for improving the quality of life for individuals living with NF when giving testimony to the Senate and House appropriations committees. She recruits and mentors grassroots volunteers to join into the national NF Network Advocacy Program to give individuals with the genetic condition of neurofibromatosis a voice on Capitol Hill.

 

Sharon Loftspring, parent to young adult child with NF1

Sharon Loftspring first learned the word “neurofibromatosis” when her daughter was 2 years old and the pediatrician noticed numerous cafe-au-lait spots.  Elana is now 23.  When Elana was 11, her neurologist discovered a brain tumor during a routine MRI; later that year, she underwent brain surgery to remove it.  Elana’s NF journey has been filled with struggles and successes.  Elana faces both cognitive and social challenges due to her NF.  At the same time, she has accepted her diagnosis by getting involved in the NF Network and its advocacy program.  She recently graduated from the University of Texas, and is now living independently.   Sharon continues to get support from the NF Network and the many people she has met through it, people who have helped Elana reach adulthood.

 

Gregg Erickson, parent to young child with NF1

Gregg Erickson is the Executive Director of Neurofibromatosis North Central (NFNC), a member organization of the NF Network, which serves the NF communities in MN, WI, ND, SD, MT and WY.  The father of three, Gregg lives in Rochester, MN where he coaches his kids’ sports teams and aspires, one day, to fully understand what motivates his teen/tween daughters.  Gregg serves on the NF Network Board of Directors & its Leadership Council, the REiNS International Collaboration Council of Directors, the NF Collective, and is a Patient Advocacy Representative for two REiNS working groups.  He has also served as a Consumer Reviewer for the U.S. Army’s NF Research Program Peer Review Panel under the Congressionally-Directed Medical Research Program.

 

Bev Oberlander, multi-generational parent to child with NF1

Bev Oberlander is the middle generation of a multi-generational NF1 family.  She lost her dad to complications of NF1 and her brother to esophogeal cancer, most likely caused by neurofibromatosis.  In addition to herself, she also has a son and a niece with NF so she has seen NF from every possible perspective - patient, parent and family member.  Bev has been an NF patient advocate for nearly 35 years, almost as long as there has been something to advocate for.  Born and raised in Chicago, she served in multiple capacities on the NF Midwest Board before moving to California in 2004.  Bev has also served as a Consumer Reviewer for the Army's Neurofibromatosis Research Program, as an advocate with Neurofibromatosis Network, and currently is a Patient Advocate with REiNS.

Although Bev has had her challenges with Neurofibromatosis, including a pheochromcytoma during pregnancy, a partial gastrectomy due to a large neurofibroma in her stomach, a carcinoid and other NF complications, she has never let NF defeat her.  She has witnessed multiple problems and multiple surgeries in her family members, which has only strengthened her resolve to continue to fight for both a treatment and a cure for neurofibromatosis and to help NF families wherever they are to navigate through the complexities of this disorder. 

 

Linda Manth, parent to young adult child with NF2

Linda and her husband John Manth have 3 children - Erin, Christopher and Leah.  Leah was diagnosed with NF2 at age 7 and has endured numerous surgeries, specialist appointments and both IV and oral chemotherapy.  Linda has over 30 years of experience in the medical field, 25 working as a Registered Nurse in a variety of settings and has spent the past 6 years working as a Family Nurse Practitioner.  The culmination of her graduate degree was co-authoring the book Understanding NF2 with John and Dr. Scott Plotkin.  Linda and her family have been extremely active in the NF community raising awareness and funds for research.  She travels each year to Washington, DC to advocate for Federal Funding for NF Research and has also participated in the Congressionally Directed Research Programs NF Review as a consumer reviewer.  When they decided to add a service dog to their family to assist Leah with her hearing and balance, Linda and Leah attended the mandatory two-week training and certification at 4 Paws for Ability in Xenia, Ohio.

 

John Manth, parent to young adult child with NF2 and panel moderator

John Manth is the father of Leah Manth who was diagnosed with NF2 in 2007 when she was just 7 years old.  John and his family are dedicated to finding meaningful treatments and a cure for NF2.  In addition to NF2 Bio-Solutions John serves on the Board of Directors of Neurofibromatosis Northeast, as well as the NF Network, where he is the Vice President.  Since Leah’s diagnosis the Manth Family and Friends have raised $500,000 and sponsored 11 NF2 research studies.  John is a staunch advocate for federal funding for NF research and assists in coordinating, training and mentoring NF families attending the NF Network’s annual trip to Washington DC.  He has extensive experience in fund raising, non-profit organizational leadership, advocacy, and NF outreach.  John, his wife Linda and Dr. Scott Plotkin co-wrote a booklet entitled “Understanding NF2” published by NF Network.  He has also written articles on various NF topics.  Additionally, he has presented at NF Symposiums and has facilitated many NF family and patient discussions.  John teaches undergraduate courses in Violence, Global Crime, and Comparative Criminal Justice at Hilbert College in Hamburg, NY as well as a Criminal Justice Career Program to high school students.  He holds a Bachelor of Arts degree in Criminology from University of Maryland and a Master of Arts degree in Criminal Justice and Education from Buffalo State College.

 

Register today and join us for an insightful Q&A panel with these parents on Wednesday, September 16th at 7:00 PM CT/5:00 PM PT. Unable to attend? Register anyway! We will send you a digital recording of the discussion when it is available. Sign up here.