Meet Kyle and Rose: The KARE Foundation

The Kyle and Rose Epilepsy Foundation (KARE) was formed in 2010, and is committed to raising awareness, support and a finding a cure.

In a letter to her son, Rose writes: “It is my hope and desire that what I build today will be the foundation of your future.  I want to help find a cure for you and all of the other children and family members who suffer with epilepsy.

Kyle, it hurts my heart when a seizure takes control of you.  It frustrates me that the seizures strip you of your memory.  I hate watching your seizures take away all that you have learned. I want to make a difference, for you and all those who live with epilepsy.  Together we can make a difference. We will make a difference Kyle.”

For more information on the foundation you can visit their website at karefoundation.org.

And, once the holiday parties are over, you can kick up your heels at the Kick off Gala for the Kyle and Rose Epilepsy Foundation.

Event Details
February 20, 2011
Champagne Brunch Formal Gala
Radisson Hotel, Bensalem PA
For ticket information contact Jill Pavel at 732-423-7727 or Jill@youreventsolutionsllc.com.

If there are organizations in your area that need to get the word out, let me know by adding a comment below.

Is your school Thinking About Epilepsy?

The Epilepsy Foundation of New Jersey (EFNJ) has been tackling the topic of epilepsy in schools all over the New Jersey. In fact, since 2007 the organization, in conjunction with the Anita Kaufmann Foundation, has educated over 20,000 fifth grade students on the topic of epilepsy using a program called Thinking About Epilepsy.

The 40 minute presentation, which is offered at NO COST, was created to increase awareness and to reduce stigma’s about epilepsy. In each presentation, the 5th graders are taught how to recognize different seizure types and provide the proper first aid.

“The presentation was informative, interactive, and well received by our students and staff. The students are now more comfortable with the topic of epilepsy.” – School Nurse Memorial School

If you are interested in arranging a presentation or have a connection with any school that may benefit from this program please call Jenna Andolora of the Epilepsy Foundation of New Jersey. You can reach her at 1-800-336-5843 or jandolora@efnj.com.

Thinking About Epilepsy is coming to the following schools in 2010. Is your school scheduled?

Immaculate Conception-Annandale
Washington School-N.Arlington
Hoover School-Begenfield
Cherry Street School-Bridgetown
Richard Butler School-Butler
Lakeview School-Denville
Academy School-Dover
East Dover-Dover
Nicholas S. LaCorte #3-Elizabeth
Gibbsboro School-Gibbsboro
Nehausey MS-Gibbstown
Alexander Sullivan School-Jersey City
Nicolaus Copernicus School-Jersey City
PS 29-Jersey City
Garfield School-Kearny
Soehl M.S-Linden
All Saints Regional Catholic-Manahawkin
Marlboro Elem. School-Marlboro
Upper Pittsgrove-Monroeville
Netcong Elem. School-Netcong
Walter M. Schirra- Old Bridge
Harmony Township School-Phillipsburg
East Dover Elem School-Toms River
Birches Elem School- Turnersville
Thomas Jefferson-Tunersville
Robert Waters School-Union City
Brookside Elem. School-Westwood

Does this sound like a program you would want to bring to your school? Let me know what you think about talking about epilepsy with kids.

Living Well With Epilepsy honored as a 2010 Top Epilepsy Blog

Radiology Technician Schools has recently named Living Well With Epilepsy as a 2010 Top Epilepsy Blog. Please join us in saying Thank You! We are thrilled to have this honor. This can only mean a little bit more of that good ‘ole epilepsy awareness.

Radiology Technician Schools is a website dedicated to help those who are considering a career as a radiology technician.

To see the list of winners you can visit the site at www.radiologytechnicianschools.com/features/epilepsy/

Thanks again from all of us in the epilepsy community and Living Well With Epilepsy.

An inside look at Steve Wynn and Joey’s Song



Steve Wynn



In March of 2010, Michael Gomoll lost his son suddenly to Dravet’s Syndrome, a rare form of epilepsy. Gomoll then established The Joseph Gomoll Foundation to honor his son, and began preparing for the release of the Joey’s Song project. One of the leading supporters in the Joey’s Song project has been Steve Wynn.

You may know Wynn from his work with The Dream Syndicate, a band that–along with REM and the Replacements–practically invented the American indie rock scene of the 1980s. Or maybe you tuned in when he played on the Late Show with David Letterman earlier this year.
In 25 years, Wynn has released at least that many albums and has seen over 300 of his songs recorded. He has been prominently featured in Rolling Stone, Mojo, Uncut, Entertainment Weekly, People, The Los Angeles Times, New York Times and countless other publications all over the world.

I took a few minutes to talk with Michael Gomoll about the Joey’s Song project and Steve’s involvement. Mike told me, “I wrote Steve directly because I am a fan [of his] and Joey’s story hit home with him. I have only found a couple artists with a more direct tie to seizure disorders, most are just moved by our story. But really, we reached out to Steve because he is a music legend and Steve said yes.”




Northern Agression



In addition to Joey’s Project, Wynn has been busy working on his latest album titled, “Northern Agression.” When asked Steve said that, “We certainly had the freedom to let it fly [on this album]. This was me and the Miracle 3 doing what we do best–colliding against each other and our surroundings, not holding back and barely taking stock until all was done.”
 
US Release of Northern Agression: November 30
To hear a clip of Resolution, the lead trak visit

Pre-order album from Yep Roc Records
To buy album
To view Steve Wynn’s anthology

Let me know if you want to hear more about Dravet Syndrome, Joey’s Song, or any of the artists participating in the project.

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