L080726 2026 Minnesota Neurofibromatosis Symposium - Virtual Option
If you would like to attend the 2026 Minnesota Neurofibromatosis Symposium VIRTUALLY, please register for this option. Once you select you option, we are not able to adjust or change to the in-person option.
The NF Symposium is an annual free educational event hosted by Children’s Minnesota, University of Minnesota and Mayo Hospital and Clinics featuring speakers and special guests discussing topics related to neurofibromatosis type 1 and the Schwannomatoses, including NF2. Care providers, patients and families are welcome to learn more about features and management of these conditions. This event is sponsored by the generous contributions of the Children’s Tumor Foundation and Minnesota Genetics Research department.
Target Audience
Physicians, nurses, genetic counselors, patients and families of those with neurofibromatosis.
Learning Objectives
- Describe current themes in clinical research of treatments for NF1 and NF2
- Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic intervention are appropriate for children with NF1
- Recognize the varied experiences of patients affected with NF2-related schwannomatosis
- Identify opportunities to work with legislators to advocate for people affected by rare diseases
2026 Minnesota Neurofibromatosis Symposium Agenda
| TIME | TOPIC | PRESENTER |
|---|---|---|
| 7:30-8:00 a.m. | Registration | |
| 8:00-8:10 a.m. | Welcome and Introductions | Dinel Pond, MS, CGC |
| 8:10-8:45 a.m. | Introduction to NF1 | Kati Anderson, MD |
| 8:45-9:15 a.m. | Patient Care: Neurocognitive testing in children with NF1 | Jeremy Alden, PhD, LP |
| 9:15-0:00 a.m. | Patient Care: Growth hormone in NF1 | Sarah Murphy, DO |
| 10:00-10:15 a.m. | Break | |
| 10:15-11:00 a.m. | Patient Care: Dermatologic management of neurofibromas | Kristen Hook, MD |
| 11:00-12:00 p.m. | NF1 Research Corner | |
| - NF-SWN VCEP rules for NF1 and SPRED1 | Alicia Gomes, MS, CGC | |
| - Building cellular immunotherapies for MPNST treatment | Kyle Williams, PhD | |
| - Updates on clinical trial for MPNST | Robert Galvin, MD | |
| 12:00-12:15 p.m. | Patient Resources: | Erica Berg & Dale Berg |
| 12:15-1:00 p.m. | Lunch | |
| 1:00-1:30 p.m. | NF2 Research | Kim Ostro, PhD |
| 1:30-2:00 p.m. | Genetics: NF2 and genetic testing | Lisa Schimmenti, MD |
| 2:10-3:00 p.m. | Forum - Patient Experience: Patients presenting on experience with NF2 | Danette Fettig-Halloran Elizabeth & Allan Halloran Rissa Hall, MS, CGC |
| 3:00-3:15 p.m. | Break | |
| 3:15-3:45 p.m. | Working with Legislature: Rare diseases | Erica Barnes |
| 3:45 p.m. | Closing Comments | Amy Lebedoff, MD Dinel Pond, MS, CGC |
Agenda subject to change.
DISCLOSURE STATEMENT:
It is our intent that any potential conflict should be identified openly so that the listeners may form their own judgments about the presentation with the full disclosure of the facts. It is not assumed any potential conflicts will have an adverse impact on these presentations. It remains for the audience to determine whether the speaker’s outside interest may reflect a possible bias, either the exposition or the conclusions presented.
Planning committee members and presenter(s) have disclosed they have no relevant financial relationships with ineligible companies whose primary business is producing, marketing selling re-selling, or distributing healthcare products used by or on patients and have disclosed that no conflict of interest exists with the presentation/educational event.
FACULTY
Jeremy Alden, PhD-LP, Psychologist, Children's Minnesota
Kati Anderson, MD, Pediatric Geneticist, University of Vermont
Erica Barnes, Director of the Minnesota Rare Disease Advisory Council
Erica Berg & Dale Berg, Patient Advocates
Robert Galvin, MD, Pediatric Hematologist-Oncologist, researcher, University of Minnesota
Alicia Gomes MS CGC, Genetic Counselor and Researcher, University of Alabama
Rissa Hall, MS, CGC, Genetic Counselor, Fairview Health Services
Danette Fettig-Halloran, Elizabeth and Allan Halloran, Patient Advocates
Kristen Hook, MD, Pediatric Dermatologist, University of Minnesota
Sarah Murphy, DO, Pediatric Endocrinologist, Children's Minnesota
Kim Ostro, PhD, Researcher, Johns Hopkins University
Lisa Schimmenti, MD, Geneticist, Mayo Clinic
Kyle Williams, PhD, Pediatric Hematology-Oncology, Researcher, University of Minnesota
PLANNING COMMITTEE
Amy Lebedoff, MD, Genetics and Genomics, Children’s Minnesota (Course Director)
Dinel Pond, MS CGC, Genetics and Genomics, Children’s Minnesota (Course Director)
Anne Bendel, MD, Pediatric Hematologist-Oncologist, Children's Minnesota
Amy Bruzek, MD, Pediatric Neurosurgeon, Children’s Minnesota
Radhika Dhamija, MBBS, Medical Geneticist, Neurologist, Mayo Clinic
Clay Hoerig, DO, Pediatric Hematologist-Oncologist, University of Minnesota
Maggie Skrypek, MD, Pediatric Hematologist-Oncologist, Children's Minnesota
Sarah Wimmer, RN, Pediatric Hematology-Oncology Clinic, Children's Minnesota
Russell Wolters, MD, Pediatric Hematologist-Oncologist, Children’s Minnesota

Accreditation Statement:
In support of improving patient care, Children’s Minnesota is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
Children’s Minnesota takes responsibility for the content, quality and scientific interest of its accredited continuing education events.
Credit Statement:
AMA
Children’s Minnesota designates this enduring activity for a maximum of 6.0 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent to their participation in the activity.
ANCC
Children's Minnesota designates this enduring activity for a maximum of 6.0 ANCC nursing contact hour. Nurses should claim only the credit commensurate with the extent of their participation in the activity.
NSGC
This event has been submitted to the National Society of Genetic Counselors (NSGC) for approval of Category 1 CEUs. The American Board of Genetic Counseling (ABGC) accepts CEUs approved by NSGC for purposes of recertification. Approval for the requested CEUs and Contact Hours is currently pending.
This program offers 6.0 contact hours of continuing education. Most medical professional organizations accept AMA PRA Category 1 Credits™. It is the individual’s responsibility to determine whether an education activity meets the continuing education requirements of their respective licensures and/or professional boards. Go to your respective organization’s website for more detailed information regarding credit requirements.
Available Credit
- 6.00 AMA PRA Category 1 Credit™
- 6.00 ANCC
- 6.00 Attendance
- 6.00 Approved AMA PRA Category 1 Credit™
Please make sure to click the TAKE COURSE button to complete your registration for the event.
REGISTRATION CLOSES Wednesday, July 29 AT NOON.
WHEN SELECTING YOUR FORMAT OPTION, SELECT CAREFULLY AS NO TRANSFERS FROM ONE FORMAT TO THE OTHER WILL BE PERMITTED. YOU WILL BE LOCKED INTO YOUR VIEWING OPTION.
Required Hardware/software
You will need a computer or phone with either internet or Wi-Fi access.

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