I hope you are doing well. I wanted to follow-up on a letter I sent you to let you know about some of the progress we are making with the RE Children’s Project (www.rechildrens.org) in the ongoing effort to find a non-invasive cure for Rasmussen encephalitis (RE). As you may recall, a group of clinical and basic researchers have formed a consortium to work together to find a non-surgical cure for RE. This is supported by Mr. Seth Wohlberg, parent advocate and founder of the RE Children’s Project. I am based at the Mattel Children’s Hospital, Ronald Reagan Medical Center at UCLA working under the guidance of Dr. Gary Mathern.
One of our primary goals is the continued development of our tissue bank of post-surgical RE tissue, blood and cerebrospinal fluid. In the last 6 months, we have collected surgical specimen from 9 patients with RE. Since inception of the tissue transfer program in 2012, we have collected specimen from 29 patients at 16 epilepsy centers in 7 countries. Domestic participating institutions include: UCLA, Johns Hopkins, Children’s National Medical Center, University of South Alabama Medical Center, Duke University Hospital, Ann & Robert H. Lurie Children’s Hospital, Children’s Hospital Colorado, Texas Children’s Hospital, Oklahoma University Medical Center, Boston Children’s Hospital and Washington University St. Louis. International participating institutions include: University of Alberta Hospital (Canada), The Children’s Hospital at Westmead (Australia), Hospital das Clínicas de Ribeirão Preto (Brazil), Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta (Italy) and Hospital de Santa Maria (Portugal).
We are the only group advancing a global consortium dedicated to this rare and devastating disease. Hopefully you will support our cause by helping us collect this material. We have developed a very easy protocol to collect the tissue, and we pay for all shipping and handling. We have IRB approval to collect the material as a tissue bank at UCLA, and we will coordinate all logistics related to the transfer.
I would like to ask that if you have a case of RE going to surgery, please let me know and also open a dialog with the patient and family about banking the excess tissue that is resected as part of the planned neurosurgery. It is intended that the brain samples removed for research is no more or less than what you would do for your standard surgical treatment. I have attached a copy of the specimen collection instructions and IRB approval letter for your reference.
Thank you for your time and consideration, and please keep this note somewhere where you can find it if an RE case comes your way. My contact information is included below, please feel free to contact me at any time.
RE Children’s Research Consortium
Phone: +1 615-293-8365