Aiden "Squishy" Ward

So  I have had many of you ask about the Ohtahara gathering and what exactly it is for, This will give most of the Ohtahara parents and families the first chance to meet with other parents going throught the same chalenges and treatments, but it will also be a chance to get great information from guest speakers regarding testing and other thing relating to such a rare syndrome. For us and most families out there there has not been given a reason as to why our kids suffer from this horrible syndrome and to be able to get in contact personally with people in the field that are doing testing and different types of treatments is extreamly important.


                    OHTAHARA SYNDROME GATHERING

EVENT DATES: FRIDAY, JUNE 28^TH- SATURDAY, JUNE 29^TH

LOCATION: OMAHA, NEBRASKA

DETAILS:

An event organized by Aarons Ohtahara in honor of the families with children who have Ohtahara Syndrome. 

It is our hope at Aarons Ohtahara that this event will be a memorable, positive, and wonderful experience for the families attending.  This event will allow those attending to meet with other families who share in the experience, tears, frustrations, joys, fears, and love that go along with an Ohtahara Syndrome diagnosis.  It will also be an opportunity for families to meet face to face with medical professionals in the rare disease community that are dedicating their time and careers to not only Ohtahara Syndrome, but also to pediatric epilepsy.  Last year families were given an opportunity to participate in a research project through Boston Childrens Hospital and a team from this research program plans to attend the event, with the hope of sharing information about the research conducted, results, and to be available to answer questions face to face with the families.  Sanford CoRDS (Coordination of Rare Diseases at Sanford) would like to attend and share information about their rare disease registry.  More topics will include the possibility of further research opportunities regarding OS.  An opportunity such as this can really strengthen our community, in research, support, and awareness.

www.ohtahara.org