http://www.hemifoundation.org/I had a superb weekend in the northeast at the American Epilepsy Society conference, and met some amazing people who have dedicated their lives to helping children with Epilepsy.
Seth Wohlberg, Susan Axelrod, and I met to discuss what we are doing with The Hemispherectomy Foundation, The RE Children's Project (being founded by Seth), and many other topics. Seth's daughter, like Jessie, underwent a right Hemispherectomy for Rasmussen's, and Susan's grown daughter had a life full of epilepsy, but is now seizure free. Susan is obviously very passionate about her work, and that was apparent as she talked to us for nearly an hour about her daughter (who actually called during our meeting), and her work with CURE (Citizens United for Research in Epilepsy) http://www.cureepilepsy.org/home.asp
Susan's passion was only exceeded by her friendliness and warm nature. She's a parent, like us, who's child faced tremendous hardships, and who created something positive. She told how excited that she was to meet "The Rasmussen's Dads". Seth and I both like the name...who knows, it may stick. Anyway, it was a great meeting, and evidently Susan liked it as well, as she blogged about it on the CURE website. Check it out here > http://presidentscorner.cureepilepsy.org/
Earlier that morning we had the honor of meeting with Dr. Frances Jensen of Children's Hospital in Boston. Dr. Jensen will be the president of the American Epilepsy Society in 2012. She also spoke with Seth and I for about an hour. She is on fire about "out-of-the-box" research. She is really excited about how research into Rasmussen's Encephalitis has the chance to help the Epilepsy Community as a whole. I must say, Seth and I are excited about that as well. By the time our meeting ended, I was fired up and ready to take on anything. She is going to make a super president of AES, and I look forward to working with her over the years.
Saturday night, Seth hosted a dinner for some very special guests, many of whom are members of the
Hemispherectomy Foundation's Medical Advisory Board (
http://hemifoundation.intuitwebsites.com/medical_advisory_board.html )
Clockwise, starting from the lower left is yours truly, then
Seth,
Philip Overby (Seth's daughter's neurologist from Stamford, CT),
Ken Laxer from
UCSF,
Dr. Andermann from Montreal Neurological Institute (Also worked with Dr. Rasmussen years ago, was instrumental in early Rasmussen's research, and member of the
Hemi Foundation MAB),
Dr. Hernandez from Cook Children's in Fort Worth (member of the
Hemi Foundation MAB), and
Dr. Mathern from UCLA (Co-Chair of The
Hemi Foundation MAB)
I must tell you, these are extremely smart and talented men who have made their life caring for children like ours. I have nothing but respect for them and their work. It was an honor to meet with them. They gave us some great ideas on next steps with Hemispherectomy Foundation work and Seth's project.
Saturday afternoon, we met with Dr. Aaron Cohen, from Methodist in Indianpolis (and Co-Chair of The Hemi Foundation MAB), along with Dr. McNamara who also did some incredible early research on Rasmussen's Encephalitis.
Dr. Cohen is working with The Foundation as we prepare for this summer's Hemi Foundation National Family Retreat in Indianapolis. In Addition, Dr. Cohen is the Surgeon who, along with The Hemispherectomy Foundation, orchestrated the amazing humanitarian efforts to perform a hemisphereotomy on little Anes from Bosnia. Dr. Cohen assembled the entire medical team, pro bono, and Anes is back in Bosnia seizure free. This story will be airing on "The Doctors" TV show on December 14th. Be sure to set your DVR.
Jessie says to say hi, and God Bless!
Cris
