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Hypothalamic Hamartoma Highlighted by the Epilepsy Foundation March 27, 2015

Posted by mvarlan in Uncategorized.
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Gelastic seizures often go undiagnosed due to the ambiguous nature of their appearance. Many parents are told they have a “happy baby” and encouraged not to “look for trouble.”

Fortunately, parents usually listen to their inner voice telling them that something is not quite right. Although most commonly found in people with hypothalamic hamartoma (HH), gelastic seizures can be present in those without brain tumors.

That being said, without more recognizable seizure activity, HH can continue to go undiagnosed. The Epilepsy Foundation has done the HH community a great service by highlighting HH in their description of gelastic seizures.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

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Three Day Weekend of Support, Education and Empowerment! March 3, 2015

Posted by mvarlan in Uncategorized.
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Please come and join the hypothalamic hamartoma community for a 3-day weekend of support, education, and empowerment!

  • Friday, July 10th – Meet and greet with other families and individuals with HH.
  • Saturday, July 11th – All day symposium with physicians that specialize in HH from all over the country.
  • Sunday, July 12th – We will have family forums in the morning to discuss subjects related to HH and how other families deal with those challenges. Closing ceremonies will be in the afternoon.

Hope for Hypothalamic Hamartoma will be hosting the meet and greet, family forums, and closing ceremonies at the Marriott Medical Center in Houston, Texas.

Saturday’s symposium will be at Texas Children’s Hospital, across the street from the hotel.  We have reserved a limited number of rooms at the Marriott for U.S. $81 per night.

Invited speakers include Barrow HH experts John Kerrigan, MD, John Fulton, PhD, Oliver Oatman, DO, and Maggie Bobrowitz, RN.

The link below is set up to reserve your room on-line.   You may also call (713) 796-0080 or 1-888-236-2427 and mention Hope for Hypothalamic Hamartomas.

Book your group rate: Hope for Hypothalamic Hamartomas

Information on Houston Airports:

www.fly2houston.com

Transportation:

Yellow Cab:  www.houstonyellowcab.com

Super Shuttle:

from IAH- www.supershuttle.com/en/IAHAirportShuttleHouston.html

from HOU- www.supershuttle.com/Locations/HOUAirportShuttleHouston.aspx

Houston Metro: www.ridemetro.org/SchedulesMaps/SystemMaps/pdfs/METRO-TMC-closeup-map.pdf

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center