Find A 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.

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.

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.

 


 

Illinois/Chicago

Amita Health – Wheaton

Adults and Children

1147 Butterfield Road, Wheaton, IL 60189

Clinic Director

Dr. Nikolas Mata-Machado

Dr. Mata-Machado started seeing NF Patients through Amita Health in July 2016. Before that he had a clinic at Loyola and served a fellowship with Dr. Tonsgard at the University of Chicago. Amita Health is formerly known as Adventist Health.

Appointments: 847-490-4222

Amita Health/St. Alexius Medical Center – Hoffman Estates

Adults and Children

1555 Barrington Road, Hoffman Estates, IL 60169

Clinic Director

Dr. Nikolas Mata-Machado

Dr. Mata-Machado started seeing NF Patients through Amita Health in July 2016. Before that he had a clinic at Loyola and served a fellowship with Dr. Tonsgard at the University of Chicago. Amita Health is formerly known as Adventist Health.

Appointments: 847-490-4222

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

Children only; Adults for a one-time consult

467 W Deming Pl, Chicago, IL 60614

Clinic Co-Directors

Joel Charrow, MD

Robert Listernick, MD

Pediatric Ophthalmologist

Janice Lasky-Zeid, MD

Clinic Coordinator & Genetic Counselor

Allison Goetsch, MS, CGC

Appointments: 312-227-6120 (The NF Clinic is held the first three Thursdays of each month)

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University of Chicago Hospital and Clinics

Adults and Children

5841 S Maryland Ave, Chicago, IL 60637

Clinic Director

James Tonsgard, MD

Clinic Coordinator

Debra Ruckman, RN 773.834.1927

Research Coordinator

Cynthia MacKenzie, RN 773.203.2344

Appointments: 773-702-6169

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University of Chicago Hospital and Clinics

Adults and Children

7350 West College Drive, Suite 102, Palos Heights, IL 60463

Clinic Director

James Tonsgard, MD

Clinic Coordinator

Debra Ruckman, RN 773.834.1927

Research Coordinator

Cynthia MacKenzie, RN 773.203.2344

Appointments: 708-448-8000

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Wisconsin

American Family Children’s Hospital

Children

1675 Highland Ave, Madison, WI 53792

Clinic Director

Neha Patel, MD

Clinic Coordinator

Abby Roth RN BSN CPHON

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

Children’s Hospital of Wisconsin

Children; Adults for an initial consult

9000 W Wisconsin Ave MS 716, Milwaukee, WI 53226

Clinic Directors

Donald Basel, MD, Genetics

Dawn Siegel, MD, Dermatology

Clinic Coordinator

Cristin Griffis, MS, CGC

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

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Froedtert and Medical College of Wisconsin

9200 W Wisconsin Ave, Milwaukee, WI 53226

Clinical Director

Jennifer Connelly, MD

Clinical Coordinator

LeeAnna Patterson, MSN, APNP-BC

Hours: Fridays 8am – 3pm

Appointments: 414-805-0994

UW Cancer Center at ProHealth Care

Adults

UW Cancer Center at ProHealth Care, N16 W24131 Riverwood Drive, Waukesha, WI 53188

Clinic Director

Hendrikus Krouwer, MD

Appointments: 262-696-5690

Missouri/St. Louis

The Cardinal Glennon Children’s Medical Center Neurofibromatosis Clinic

Children Only

1046 South Grand Boulevard, St. Louis, MO 63104

Director

Thomas Geller, MD

Clinical Nurse Coordinator

Julie Engel RN

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

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Washington University School of Medicine Neurofibromatosis Clinic

Adults and Children

660 South Euclid Avenue, St. Louis, MO 63110

Director

David Gutmann, MD, PhD

Clinic Coordinator

Jessica Heuring, BSN, RN

Appointments: 314-454-6120

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Indiana

Indiana University Neurofibromatosis Clinic

Adult and Children

705 Riley Hospital Drive, Indianapolis, IN 46202

Clinic Directors

Lisa Smith, MD

Laurence Walsh, MD

Clinic Coordinator

Yvonne Hayden, RN

Appointments: 317-948-7450

Iowa

University of Iowa Hospitals and Clinics Neurofibromatosis Clinic

Adults and Children

University of Iowa Hospitals and Clinics, 200 Hawkins Drive, Iowa City, IA 52242

Director

Pamela Trapane, MD

Clinic Co-Coordinators

Karin Panzer MS

Appointments: 319-356-2229

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Kentucky

University of Louisville Neurofibroatosis Clinic

Adults and Children

571 South Floyd Street, Louisville, KY 40202

Director

Alexander Asamoah, MD, PhD

Clinic Coordinator

Kelly Jackson, MS, CGC

Appointments: 502-588-0888

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