Celebrating 35 Years

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Check Out NF Midwest Area Clinics Below or Go To NFCOLLECTIVE.ORG

Finding the Right Doctor

Finding the right doctor to oversee the care of your neurofibromatosis is the most important thing you can do for you or your loved one. The neurofibromatoses are very complicated disorders that require many different types of specialists. To oversee care of the patient with neurofibromatosis 1, 2 or schwannomatosis the best approach is to have one doctor or clinical team who are VERY experienced in NF and who have specialists that they regularly refer NF patients to.

If you are looking for an NF Generalist outside of NF Midwest’s coverage area, please go the nfcollective.org, a site created as a collaborative effort with NF Midwest and other organizations to provide a single, reliable, updated resource of NF providers.

You may find the article What to do if your personal physician doesn’t know a lot about NF? helpful.

There is no specific definition of an “NF Doctor”. We prefer doctors who see many patients with NF and are also involved in NF research and attend NF conferences. These doctors are generally, but not always, neurologists or geneticists. They treat hundreds of patients with NF1 and thus have a high degree of experience and expertise. (The number of patients seen with NF2 and schwannomatosis will naturally be a lot less). That being said, there are a number of well established “NF Doctors”/Clinics that NF Midwest has supported and worked with for many years. They are all also readily recognized as being involved in the national effort for NF care through involvement in conferences, clinical trials and studies. We list those doctors and clinics here.

NF doctors are the quarterbacks that have the overall picture of care for the patient with NF. When needed, they regularly refer patients to other specialists who in turn have gained a lot of experience with NF by working as a “team” with the NF doctor. These specialists may include neurosurgeons, orthopedics, oncologists, otolaryngologists, endocrinologists, plastic surgeons and many more. For the best coordinated care, it is very important to see an “NF doctor” first – if possible. While not being the ones to directly treat the complications of NF, the “NF doctor” has the best overall view of the options for care from experience and sharing with other “NF doctors”. For instance, a neurosurgeon may prescribe surgery for a tumor, while an oncologist may prescribe chemotherapy, but the “NF doctor” may have a clearer, unbiased idea of the best approach.

Again, there are degrees of “NF expertise”. Some doctors and clinics have benefitted by a high population of patients with NF and/or years of experience, but it can be impossible and often impractical to go to the ones with the greatest degree of experience. There are many doctors and clinics that are looking to build their population of NF patients and their experience. They are capable of caring for patients with NF, especially if they are willing to consult with the doctors who do have the vast experience. Look for doctors such as these if you cannot get in to see an “NF Doctor”. Also, be proactive in you or your loved one’s care by learning all you can about NF. If you have a complication or symptom that you are concerned about, don’t hesitate to move on to a doctor with more experience or ask your doctor to consult with one. You may also contact the NF Midwest office for other options.

The article What to do if your personal physician doesn’t know a lot about NF? may help you.

See below for “NF specialists” in the NF Midwest service area or go to www.nfcollective.org to view options nationwide.



University of Illinois Hospital (Children Age 0-18)

Children (ages 0-18 only)

Clinic Director

Dr. Nikolas Mata-Machado


Lawrence Kaufman, MD, PhD

Clinic is held on Wednesday afternoons, second floor 2E Child & Youth Center.

Appointments: 312-996-7416

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University of Illinois Hospital (Adults 19+)

Adults 19+

Clinic Director

Stefania Maraka, MD

Clinic is held on Wednesday mornings, 4th floor, 4E Neuroscience.

Appointments: 312-355-0510

University of Chicago Hospital and Clinics

Adults and Children

Clinic Director

James Tonsgard, MD

Clinical Nurse

Deborah Ruckman, RN 773.834.1927

Research Coordinator

Cynthia MacKenzie, RN 773.203.2344

Please call Deborah Ruckman for clinical questions or appointments at 773.834.1927.

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University of Chicago Hospital and Clinics

Adults and Children

Clinic Director

James Tonsgard, MD

Clinical Nurse

Deborah Ruckman, RN 773-834-1927

Research Coordinator

Cynthia MacKenzie, RN 773-203-2344

Please call Deborah Ruckman for clinical questions and appointments at 773-834-1927.

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Ann & Robert H. Lurie Children’s Hospital of Chicago

Children only; Adults for a one-time consult

Clinic Co-Directors

Joel Charrow, MD

Robert Listernick, MD

Pediatric Ophthalmologist

Janice Lasky-Zeid, MD

Clinic Coordinator & Genetic Counselor

Allison Goetsch, MS, CGC

The NF Clinic is held the first three Thursdays of each month

Appointments: 312-227-6120

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Malnati Brain Tumor Institute-Northwestern Memorial Hosptial


Neuro-Oncologist & Neurologist

Karan Dixit, MD

Appointments: 312-695-4360

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Indiana University Neurofibromatosis Clinic


Clinic Director

Steven Rhodes, MD (Children)

Clinic Coordinator

Lisa Langsford, RN, BSN

Appointments: 317-948-7450

Indiana University Neuroscience Center

Adults with NF1 & NF2

Neurologist & Neuro-Oncologist

Kathryn Nevel, MD

Appointments: 317-963-7230


University of Iowa Hospitals and Clinics Neurofibromatosis Clinic

Adults and Children


Alpa Sidhu, MD

Clinic Co-Coordinators

Karin Panzer MS

Nurse Practitioner

Samantha Schutt, ARNP

Appointments: 319-356-2229

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University of Kentucky Neurofibromatosis Clinic

Adults and children

Clinic Director

Donita D. Lightner, MD

Clinic Coordinator

Kim Osborne

The clinic is located in Kentucky Neuroscience Institute. You can contact the Clinic Coordinator at 859-218-5011 or at

Appointments: 859-323-5661

University of Louisville Neurofibromatosis Clinic

Adults and Children


Alexander Asamoah, MD, PhD

Clinic Coordinator

Kelly Jackson, MS, CGC

Appointments: 502-588-0888

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Missouri/St. Louis

Washington University School of Medicine Neurofibromatosis Clinic

Adults and Children


David Gutmann, MD, PhD

Clinic Coordinator

Erika Ramirez, RN, BSN

Appointments: 314-454-6120

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The Cardinal Glennon Children’s Medical Center Neurofibromatosis Clinic

Children Only


Amelia Kirby, MD

Clinical Nurse Coordinator

Julie Engel RN


Ali Jamal, MD

Appointments: 314-577-5397 (Clinic held 1st, third and 5th Wednesday morning of each month)

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American Family Children’s Hospital


Clinic Director

Diane M. Puccetti, MD

Clinic Coordinator

Kaylee Herfel BSN RN CPN

Appointments: 608-263-6420 (Select Option #3)

Ascension Columbia St. Mary’s

Adults with NF1, NF2, & Schwannomatosis

Clinic Director

Hendrikus Krouwer, MD

Appointments: 414-298-7250

Froedtert and Medical College of Wisconsin


Clinical Director

Fernando Santos Pinheiro, MD

Jennifer Connelly, MD

Physician Assistant

Magdalena Walentynowicz, PA-C

Hours: every other Friday 9 am – 12:45 pm

Appointments: 414-805-6804

Children’s Hospital of Wisconsin

Children; Adults for an initial consult

Clinic Directors

Donald Basel, MD, Genetics

Dawn Siegel, MD, Dermatology

Clinic Coordinator

Katie Knaebe, RN

Appointments: 414-607-5280 or 877-607-5280

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