Rasmussen's Encephalitis

Rasmussen's Encephalitis - The Search for a Cure

A good friend, and fellow Rasmussen's Dad is well underway in a concentrated effort to find a cure for Rasmussen's Encephalitis. Seth Wohlberg, whose daughter Grace had a hemispherectomy last year has created the RE Children's Project. Please check it out, and support this fine organization.

The RE Children's Project was founded in 2010 to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. The organization also supports research dedicated toward the recovery process following hemisphrectomy surgery, a life altering surgery that is the only known "cure" for the disease.

http://www.rechildrens.org

Hemi Foundation : Music Benefit - Baltimore - Feb 28th at 3:00PM

The Hemi Foundation Dreams on Wings Music Tour

The Hemi Foundation is proud to present this Sunday (2/28) at 3:00PM in Baltimore, Maryland the Dreams on Wings Music Tour. The foundation's Northeast Regional Director has put together an exciting musical event with outstanding musicians for your entertainment. It will be a family-friendly event, so come on out!!

The Dreams on Wings Music Tour will be held on this Sunday, February 28th at 3:00PM at Bourbon Street near downtown Baltimore.

The performing bands will be Starcrush, Broadcast, and Quikfire and the event will be emceed by Tyler Daniel from 103.7 FM.

Some special give-aways include AirTran Airline Tickets, Baltimore Orioles Autographed Ball and Glove, and much more!!

So if you live in the Washington D.C. / Baltimore / Philly area or anywhere within driving distance, come out and listen to some good music and support the Hemi Foundation. Kristi and I are flying in from Texas on Saturday and will be there.

You can buy tickets at the door, or on The Hemi Foundation website at http://www.hemifoundation.org .

Hope to see you there!!

Cris

I guess that the Heat Miser let a little snow fall on Southtown this year as Aledo, Texas has been blessed with a White Christmas. It was 70 degrees here yesterday. Matt said that he prayed for a White Christmas at church yesterday, so maybe he has a direct line with the Big Guy upstairs. Who knows, but we are having a wonderful time in the winter wonderland. A white Christmas is almost unheard of here in Texas. What a once-in-a-lifetime gift for the kids. I'm sure that they won't forget it.

Here are a few pictures. Merry Christmas to All !! Cris, Kristi, Matt, Jake, Josh, and Jessie.

American Epilepsy Society Meeting in Boston

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

Arm Movement

So, Jessie's OT said that she thinks that Jessie is holding back and has potential to do much more, and sure enough, the little rascal has been holding out on us. Time to turn up the Therapy.

Happy Thanksgiving to All ! Count your blessings, and never forget about all the things that you have to be thankful for.

Blessings,

Cris