Newswise — Please join us at the Angioma Alliance 2015 Family Conference at the McDonald’s Center Hamburger University, 2715 Jorie Blvd, Oak Brook, IL 60523, from July 24 to 26, 2015. To attend, you must register at www.tinyurl.com/AngiomaConference. Angioma Alliance is a 501(c)3 tax exempt organization. All contributions are tax-deductible.
Registration: Registration is $40/adult and $20/child. It includes the Friday evening reception, breakfast and lunch on Saturday, and breakfast on Sunday as well as the sessions and childcare.
AGENDA:
FRIDAY, JULY 247-9 p.m.: Evening Reception, Registration and Welcome
SATURDAY, JULY 25 (7:30 a.m.- 5 p.m.)7:30 a.m.Breakfast, Registration, Childcare Check-In
8 a.m.~ Dr. Issam Awad - Cavernous Angioma: Everything You Wanted to Ask the Neurosurgeon. For the first 90 minutes, Dr. Awad will cover a range of cavernous angioma topics: basic disease information, genetics, and clinical decision-making on topics such as surgery, pregnancy, and spinal cavernous angioma. For the final 30 minutes, he will discuss the latest research on drug treatments and news on clinical drug trials. Dr. Awad is the Chair of the Angioma Alliance Scientific Advisory Board and the world's leading expert on the illness.~ Dr. James Tao - Epilepsy Management. Dr. Tao, Director of Epilepsy Neurology at the University of Chicago, will speak about managing seizure in the context of cavernous angioma.~ Dr. Gregory Christoforidis - Neuroradiology. Ever wondered what all the white and black spots were on your MRI. Dr. Christoforidis, Director of Neuroradiology at the University of Chicago, will enlighten us.~ Dr. Elliot Roth - Recovery from Hemorrhage. Dr. Roth is the Chair of the Department of Physical Medicine and Rehabilitation at Northerwestern Feinberg School of Medicine. He will discuss rehabilitation and the latest advancements in improving physical function.~ Dr. Susan Ksiazek - Neurophthalmology. Dr. Ksiazek, Assistant Professor of Ophthalmology at the University of Chicago, will discuss options for addressing visual impairment as a result of hemorrhage and surgery.~ Dr. Marc Slutzky - Brain/Machine Interface: The Future of Rehabilitation. Dr. Slutzky is a neurologist at Northwestern Feinberg School of Medicine and a researcher focusing on developing prosthetics and orthotics that can be operated using thought.~ Conversation Groups - we will break into small groups based on shared roles/characteristics of illness: Brainstem, Seizure, Post-Surgical, Caregiver, Parent, and Multiple lesions. We will have two conversation group sessions to allow participation in more than one group.
SUNDAY, JULY 26 (8 a.m. - noon)~ Connie Lee, Psy.D. - will present on Anxiety after Hemorrhage: The Monster Under the Bed~ Eileen Benthal - Author of "Breathing Underwater: A Caregiver's Journey of Hope", Eileen is the mother of Johanna, a 17-year-old who has had a particularly difficult journey with cavernous angioma.~ Myrna Sarowitz, Psy.D. - Clinical Psychologist, Trained Life Coach, and cavernous angioma patient will present on Life Coaching: Transitioning to Acceptance~ Dr. Connie Lee and the Angioma Alliance Board of Directors will discuss how Patients Lead the Way to a Cure.~ Conversation Groups, Round 2
Children's Program: There will be a children's program this year. We will have an artist who will work on projects with the kids. While the children will always be supervised by adults (nursing students and teachers), some additional programming will be created by our affected teens, including a video project. For quieter time, we'll have movies and board games. The children will be staying in a room adjacent to the adult meeting room.
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