There has been a flurry of activity among Hopkins, Boston Children’s, and UCLA during the past two weeks. Progress is being made on a number of fronts. Drs. Pardo, Jensen, and Mathern were on conference calls as we continue to put in place an infra-structure to transfer tissue to the institutions that need it most for research purposes. Dr. Tobi Loddenkemper of Boston Children’s will be traveling this week to Hopkins to meet with Dr. Pardo and Joe Lewis to compare notes on the patient registry in development, IRBs and MTAs (material transfer agreements).
As discussed in my last blog, the IRB governs the legal and privacy issues surrounding the transfer of human tissue. A Material Transfer Agreement (MTA) is a contract that governs the transfer of tangible research materials between two organizations, when the recipient intends to use it for research purposes. The MTA defines the rights of the provider and the recipient with respect to the materials and its derivatives. MTAs address conflicts of interest, publication rights, and intellectual property issues among other important topics. After learning about IRBs and MTAs it becomes clearer why collaboration is so difficult among these top research institutions.
Although we have a research mission, an essential part of our activities is assisting the families undergoing the despair of RE. Here are some recent e-mails.
I am a mother of a 9 year old almost 10 yrs old that has RE. I am looking for a support group and others that my daughter can talk to. As you know it is so rare that its not common to find someone in our area that has this. I really need to talk to others to relate how they feel. She was diagnosed 4 years ago through a brain biopsy. She has no evidence of seizures that we have noticed nor that an EEG has picked up. I also would like to know if its common to wet the bed with this disease. Please get back with me at your earliest convenience and Thank You for all your dedication to this rare disease.
My 5-year old son was diagnosed with RE a few months ago. The original diagnosis was Epilepsy and only during a Temporal lobe resection, to theoretically cure the seizures, did the doctors do a biopsy and discover the RE. We have tried both steroids and IVIg but they do not seem to help at all, and a trail of research has led us to you. We are considering a trial of Rituximab and then if that is not successful going ahead with a Hemispherectomy.
Finally, through your support we are impacting the world.
I’m studying scientific journalism in Germany in the 6. semester (22 years old). A couple of weeks ago I found your rechildrens.org page by chance. After reading Grace’s story I immediately knew that I wanted to write my bachelor thesis about Rasmussen’s Encephalitis. My idea is to create a whole newspaper page about this disease. This would include different articles like for example a feature, an interview and some information boxes. My goal is to inform and make people aware of Rasmussens’s and about the difficulties to find the cause of such a rare disease. It’s just so inspiring to read and see what you do for your daughter and how strong she is. Therefore I’d love to write an article about your daughter and your fight against this disease. Is that possible? It would be a great pleasure for me.
Please continue to support our efforts and donate to our cause. We need every penny to make a difference. Thank you.