Archived Updates


NOVEMBER 9, 2017: What are stroke-like episodes in SWS and how are they treated?

JUNE 2017

JUNE 21, 2017: The new data on Epidiolex looks exciting. Can my child be treated?


DECEMBER 5, 2016: Why does my child with Sturge-Weber syndrome seem to have more trouble with migraines, seizures or strokes right around the holidays?


NOVEMBER 3, 2016: Can propranolol be used to treat Sturge-Weber syndrome or diminish the appearance of port-wine birthmarks?

OCTOBER 24, 2016: Is there a link between older fathers and SWS?

OCTOBER 12, 2016: When should patients with Sturge-Weber syndrome consider surgery?


SEPTEMBER 22, 2016: With the new research and discovery of the gene that causes Sturge-Weber, would it ever be considered a disease instead of a syndrome?


OCTOBER 2, 2015: I have Sturge-Weber syndrome brain involvement but have not had seizures in many years, so I am no longer taking seizure medication. Recently however, I have bad headaches where I can’t see well, I become disoriented and am not able to talk. What are your thoughts and what do you recommend?

September 2015

SEPTEMBER 24, 2015: My child has behavioral and mood issues. How do I know if this is because of her/his seizure medication or Sturge-Weber syndrome?


AUGUST 31, 2015: What information is available about Sturge-Weber syndrome and hormonal changes in the teen years? Do seizures often increase and is this related to the hormones? What is recommended?

AUGUST 6, 2015: ANNOUNCING: Telemedicine for International Patients at the Hunter Nelson Sturge-Weber Center

JULY 2015

JULY 16, 2015: National Institutes of Health (NIH)-Funded Landmark Sturge-Weber Research Workshop


DECEMBER 5, 2014: Is there any new information out on the Sturge-Weber syndrome somatic mutation?

November 2014

NOVEMBER 26, 2014: Clinical Trial For Sturge-Weber Syndrome at the Kennedy Krieger Institute has just received Institutional Review Board and FDA approval

NOVEMBER 21, 2014: Does the Hunter-Nelson Sturge Weber Center provide evaluations for international patients?

NOVEMBER 14, 2014: My newborn has a port-wine birthmark on the forehead and the doctors are concerned about Sturge-Weber syndrome. The MRI of the brain is normal. Does that mean everything is OK and there is no brain involvement?

NOVEMBER 7, 2014: Does the Hunter Nelson Sturge-Weber Center see and care for adults with Sturge-Weber syndrome?

October 2014

OCTOBER 24, 2014: What is transition planning? What can parents do to educate themselves about transition planning?

OCTOBER 17, 2014Are medications effective for the treatment of attention issues in individuals with Sturge-Weber syndrome?

OCTOBER 10, 2014: The Sturge-Weber Syndrome Project has been re-funded for another five years through the Brain Vascular Malformation Consortium. What does this mean for future progress in Sturge-Weber syndrome clinical care?

OCTOBER 3, 2014: What is SUDEP (Sudden Unexpected Death of Epilepsy)? What causes it? Does this happen to people with Sturge-Weber syndrome?

September/August 2014

SEPTEMBER 26, 2014: Electroencephalography (EEG) Evolution in Sturge-Weber Syndrome

SEPTEMBER 19, 2014: What should a parent expect for their school-age child (6-10 years old) with Sturge-Weber syndrome whose seizures are well-controlled on medicine?

SEPTEMBER 12, 2014: Can a woman with Sturge-Weber syndrome use the pill (oral contraception)?

SEPTEMBER 5, 2014: Study by researchers at Great Ormond Street Hospital for Children in London sets new guidelines for evaluating facial port-wine birthmarks.

AUGUST 27, 2014: Ibuprofen and Oxcarbazepine Tablets by American Health Packaging: Recall - Mislabeled Packaging

Check back weekly for new posts and up-to-date information from Sturge-Weber syndrome expert Dr. Anne Comi.

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Dr. Comi announces research findings, posts important information, and answers questions of general interest to families living with Sturge-Weber syndrome. 


Tribute to Hunter Nelson

Hunter Nelson
In Memory of
Hunter Andrews Nelson
November 5, 1999 -
May 29, 2005

The dream for a cure lives on...


Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.