A Chance to Tell Your Story and Make a Difference

Hi All,
Below is a letter from Dr. Gary Mathern, Pediatrice Neurosurgeon at UCLA . If you or someone you know has epilepsy, please read and participate. Thanks, Cris


To all,
I am writing to inform you of an opportunity that as a family with someone with epilepsy you might want to take advantage of.
The Institute of Medicine (IOM) based in Washington DC is a non-partisan NGO that performs studies at the request of Congress, NIH, and the Department of Health and Human Services (DHHS) related toward developing public policy for diseases. Over time these reports have had significant impact not only on health policy in the US but internationally because of their scholarly content and thoughtful consideration of patient needs. Very few IOM studies have been on neurological diseases.
The IOM has been charged by DHHS and NIH with looking at epilepsy in determining needs that might guide federal public health policy and funding in this field. Compared with other neurological diseases, epilepsy affection 1% of the population gets fewer federal resources compared with Stroke and Parkinson’s Disease. A strong report by the IOM would likely get attention to help people with epilepsy and is an exciting opportunity for us.
As part of the IOM’s work, there will be 3 open public meetings of the IOM epilepsy committee. The first already occurred in Washington DC in January top charge the committee, the second will be at the Beverly Hilton on March 21, 2011, and the final open meeting will be in DC at the end of June. Drafts of the report will be finished by late fall 2011 with a final product spring 2012. The open meetings include time for public testimony (limited to 3 minutes) and one of the major items (Panel 1) for the March meeting is the impact of epilepsy on patients, families, etc. I know of this work because I am the representative for a couple of the sponsoring organizations, such as the ILAE, Hemispherectomy Foundation, and RE Children’s project.
The IOM public meeting in March is an opportunity for your individual voices to be heard about epilepsy and access to care. The IOM committee has already expressed that the public stories they heard at the January meeting had great impact even if each story is fairly short. If you have a passionate voice and wish to participate, here is your chance. This will be the only west coast opportunity to publically talk to the IOM. To attend, you will need to register (go to www.IOM.edu/epilepsy) and if you want to speak you will need to send them an email (instructions on the site). If you cannot attend and still want to be heard, there is an email address on the IOM web site for you to send in your comments and stories that will be passed on to the committee. The committee is interested in knowing if getting access to epilepsy care was easy or not and the quality of care that you received.
Please, also send this note to any other families in Southern California you think might be interested.
Thank you for your time. If you have any questions, please let me know. If you decide to attend please let me know as well.