L080726 2026 Minnesota Neurofibromatosis Symposium - In Person Option

Minneapolis, MN US
August 7, 2026

If you would like to attend the 2026 Minnesota Neurofibromatosis Symposium IN-PERSON, please register for this option. Once you select your option, we are not able to adjust or change to the virtual 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. 

Breakfast, snacks and a lunch will be provided for in-person attendees, as well as free admission to the museum at the Swedish Institute.  

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
Course summary
Available credit: 
  • 6.00 AMA PRA Category 1 Credit™
  • 6.00 ANCC
  • 6.00 Attendance
    • 6.00 Approved AMA PRA Category 1 Credit™
Course opens: 
05/27/2026
Course expires: 
09/07/2026
Event starts: 
08/07/2026 - 7:30am CDT
Event ends: 
08/07/2026 - 4:00pm CDT

2026 Minnesota Neurofibromatosis Symposium Agenda

TIMETOPICPRESENTER
7:30-8:00 a.m.Registration 
8:00-8:10 a.m.Welcome and Introductions 

Dinel Pond, MS, CGC
Amy Lebedoff, MD        

8:10-8:45 a.m.Introduction to NF1Kati Anderson, MD
8:45-9:15 a.m.Patient Care: Neurocognitive testing in children with NF1Jeremy Alden, PhD, LP
9:15-0:00 a.m.Patient Care: Growth hormone in NF1Sarah Murphy, DO
10:00-10:15 a.m.Break 
10:15-11:00 a.m.Patient Care: Dermatologic management of neurofibromasKristen Hook, MD
11:00-12:00 p.m.NF1 Research Corner 
  - NF-SWN VCEP rules for NF1 and SPRED1Alicia Gomes, MS, CGC
  - Building cellular immunotherapies for MPNST treatmentKyle Williams, PhD
  - Updates on clinical trial for MPNSTRobert 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 ResearchKim Ostro, PhD
1:30-2:00 p.m.Genetics: NF2 and genetic testingLisa 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 diseasesErica Barnes
3:45 p.m.

Closing Comments

Amy Lebedoff, MD
Dinel Pond, MS, CGC

Agenda subject to change.

American Swedish Institute
2600 Park Avenue
Minneapolis, MN 55407
United States

Free parking available on site. Location is walkable from Children's Minnesota Minneapolis campus.

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™
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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.