Neurofibromatosis and Schwannomatosis Southern

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Neurofibromatosis and Schwannomatosis Southern Admins: Rebecca Brown MD PhD is Director of the NF and SWN Program at UAB. She is an animal lover, hiker, and gardener. She is an avid runner.
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Renie Moss is an NF parent and patient advocate. Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis. Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities. Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom. Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients. The genetics of NF1 and NF2 are outlined below. Unlike NF1 and NF2, the inheritance patterns of Schwannomatosis are not understood due largely to lack of cases to study. However it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited.

Thank you X a thousand to Kripalani’s Hong Kong Tailors located in Homewood, Alabama. Mr. Kripalani donated two custom m...
10/19/2026

Thank you X a thousand to Kripalani’s Hong Kong Tailors located in Homewood, Alabama. Mr. Kripalani donated two custom made and tailored blouses (women’s) or work shirts (men’s) to our Symposium raffle, for 3 VERY LUCKY attendees! Mr. Kripalani’s clients fly in to see him from all over the world and his shop has been in Alabama for the last 40 years.

Whether or not you make it to the symposium, please check out his shop and make sure to give him a HUGE thanks!

Since 1978, Kripalani’s has become Birmingham, Alabama's go-to source to achieve custom looks that complement their customers' personas.

10/09/2026

UAB.edu/medicine/nfprogram/symposium

It’s only 2 weeks away— REGISTER NOW!!!

Holy WOW —  jewelers hit it out of the park with this custom jewelry representing NF (blue) and Schwannomatosis (green)....
10/08/2026

Holy WOW — jewelers hit it out of the park with this custom jewelry representing NF (blue) and Schwannomatosis (green). Jeweler Lily Wokin is an advocate for rare genetic diseases. When she came to me and offered to design charitable necklaces (all proceeds to charity) for NF and SWN, I was floored. Check out the results!

The shape references a fingerprint, saying “this is my life.” The diamonds are inset with a triangular depression that reminds us of Schwann cells— the cells that form nerve tumors. The colored stones represent people who have the diagnosis, in green (SWN) and blue (NF). The white stones stand for family and friends without the diagnosis who provide love and support.

Lily worked hard to make these as affordable as possible while still maintaining the highest quality of metal and stones. Proceeds will go entirely to a fund that defrays costs for genetic testing at the UAB molecular genomics laboratory— the world’s gold standard for NF and SWN.

10/05/2026

Interview at Jamal’s Helping Hands!

10/05/2026

There is a 9:30 - 11:00 AM opening at the UAB skin bump removal clinic tomorrow 10/06. Call 205-934-1432 if you want to take the appointment. 🥰👍🏻🤓

10/05/2026

We at the NF and Schwannomatosis Program at UAB and COA strive to reduce referrals and get to the heart of health issues in one room with as few extra visits as possible. Those extra referrals are sometimes necessary, but there is a LOT we asd doctors can do by talking, listening, and starting the treatment process.

From a premier medical journal, the New England Journal of Medicine.
"A Guide for the Perplexed Physician"
Author: Dean Ariel, M.D., M.P.H. https://orcid.org/0009-0003-8552-104XAuthor Info & Affiliations
Published October 3, 2026
DOI: 10.1056/NEJMp2603758
Copyright © 2026

In 12th-century Cairo, a physician who understood only one organ system would have been considered uneducated. One who had no use for philosophy would have inspired even less confidence. Moses Maimonides practiced medicine, codified religious law, and wrote The Guide for the Perplexed, an effort to help his contemporaries think clearly in navigating between competing systems of truth.1 Maimonides did not view these as separate paths. Today, medicine’s professional architecture would suggest he choose one direction and stick with it.
In more recent eras, specialization became a necessary aspect of professionalization. By the mid-20th century, biomedical knowledge was expanding too rapidly for any single mind to hold it all, and fragmentation was the rational response.2 The medical profession divided the body into systems, trained physicians to master one of them…and then built referral networks to reconnect what it had intentionally dismantled. Interventional cardiology, molecular oncology, microsurgery — none of these achievements emerged from generalism. The institutions that followed, from fellowship training to compensation systems that value narrow over broad expertise, were designed for a world in which knowledge is scarce. When expertise is rare, the experts become gatekeepers.

Two distinct capacities became fused along the way. The first was the ability to access and synthesize clinical knowledge. Specialist expertise was, by definition, knowledge that resided with the specialist and could not easily be found elsewhere. The second was clinical judgment: the pattern recognition forged over thousands of encounters, the procedural skills living in muscle memory, the gut-level intuition that something is wrong even before any test results reveal it. For decades, knowledge and judgment were bundled together in the specialist, and institutional authority was built on the package deal.
That package has been unraveling for years, as access to medical knowledge has been democratized. UpToDate changed the economics of information retrieval. Smartphones accelerated the trend toward democratization. Point-of-care tools made cross-disciplinary synthesis routine. Large language models did not launch this shift; they simply advanced it until it was impossible to ignore.3 Though specialists’ judgment and procedural mastery remain indispensable, their monopoly on medical knowledge is eroding. The hierarchy of modern medicine was built on that monopoly, and it’s growing increasingly shaky. The institutional structures remain. Compensation, referral patterns, and prestige still favor the subspecialist. But the knowledge asymmetry they were built on is narrowing, and the architecture has begun to shift.
I felt it rumbling recently in my primary care clinic in Tel Aviv. A man in his 60s sat in front of me with the hallmarks of clinical deterioration: poorly controlled diabetes, worsening heart failure, and a low hum of depression he had no intention of discussing. He carried a worn-out Clalit plastic bag loaded with documents and pill boxes — the bag of a man who is trying. He had an endocrinologist, a cardiologist, and a psychiatrist. His medications had been adjusted and readjusted. His ejection fraction was being monitored. By every objective metric, he was receiving good care. Yet his health was getting worse.
He was cooperative in the way patients are when they want the questioning to stop. He nodded agreeably whenever I brought up adherence to his medications, but I wasn’t convinced. After pressing gently over the course of three visits, I came out and asked him about money. He froze, offering no denial, only stillness. I didn’t make him say it out loud — there was no reason to undermine his dignity.
Every specialist he had seen had performed well within the boundaries of their discipline. The failure belonged to a system built on the assumption that if all the parts are optimized, the whole will fall into place. Later, I fed his problem list into a large language model. Within seconds, it produced a reasonable synthesis of his coexisting conditions. What it couldn’t do was read the stillness in the room. The man’s illness was not only metabolic or cardiac or psychiatric. It was economic and social — and interpretive: biochemistry and biography don’t speak the same language, and the tension between them is not a solvable problem. It is the permanent condition of medicine.
Maimonides lived in such an intersection. His Guide was written for people caught between Aristotelian philosophy and religious law, frameworks that could not be merged, only somehow simultaneously inhabited.1 Medicine asks something similar of physicians every day: stand between the protocolized and the unquantifiable and make decisions about how to move forward.
That work matters, and it deserves to be treated as a discipline rather than a quirk of personality. Medical training is generally not set up to value or develop that discipline.2,4 Medical education selects for retention of facts, often rewards narrowly defined performance, and treats intellectual breadth as a charming irrelevance. Residents who read philosophy, spend weekends in the darkroom, or proof pizza dough for 5 days may earn social praise but rarely professional esteem. Yet they are building the cognitive skills the coming era will require, as they enter an unfamiliar framework of meaning, process it alongside their own, and work within the resulting friction rather than trying to eliminate it.
Medical institutions have spent decades packaging the humanities as wellness programming: poetry to prevent burnout, art workshops to boost empathy.5 But their value is cognitive as well as therapeutic. The humanities train attention, tolerance for ambiguity, and the ability to accept the terms of competing accounts of reality long enough to learn to navigate their dissonances.
Specialization is not going anywhere, nor should it. Patient care will always require deep expertise. But the quiet assumption that the physician who integrates knowledge is worth less than the physician who subdivides it belongs to a different era. If synthesis, or the ability to hold what cannot be retrieved from a database alongside what can, is the skill that’s still precious in an age of knowledge abundance, the generalist deserves a reappraisal. At the very least, medical educators and employers might stop treating a broad mind as a warning sign.
Maimonides wrote for people suspended between worlds. Tomorrow morning, a physician will walk into an examination room and sit across from someone whose suffering refuses to be contained within the boundaries of a single discipline. The tools for retrieving information will be in the physician’s pocket. Whether that physician has learned to grasp and integrate other essential kinds of knowledge is another question entirely.

https://conf1ictedmoms.com/homeIt was awesome to meet Natosha Fraser of CoNF1cted Moms. Check out her very important car...
10/03/2026

https://conf1ictedmoms.com/home

It was awesome to meet Natosha Fraser of CoNF1cted Moms. Check out her very important caregivers support group for parents of NF kids! 🥰☕️💚💙

A community built by a NF mom who has been exactly where you are.

Dr. Eulo and Dr. Brown at the Shelby Science Center at UA in Huntsville today Saturday 10/02 9 to 1,   !
10/03/2026

Dr. Eulo and Dr. Brown at the Shelby Science Center at UA in Huntsville today Saturday 10/02 9 to 1, !

Come join me in Huntsville Saturday, October 3d!
10/01/2026

Come join me in Huntsville Saturday, October 3d!

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2000 6th Avenue S
Birmingham, AL
35294

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