NBC medical contributor Dr. Natalie Azar joined TODAY to talk more about epilepsy following the tragic death of Cameron Boyce. The parents of the Disney Channel star say he died from a seizure caused by the dangerous disorder. Watch it here.
Governor Cuomo has now signed legislation allowing Sudden Unexpected Death in Epilepsy, or SUDEP, to be listed as a cause of death on death certificates.
Ashley Edlund of Rochester WROC 8 aired this story Aug 23, 2017
to help raise awareness. See it here.
North American SUDEP Registry Newsletter - Summer 2018
Tanya’s Trot founder recognized for Epilepsy efforts
In November 2010, Tanya Johannes passed away. Her death was attributed to SUDEP, Sudden Unexpected Death in Epilepsy. Tanya’s Team was formed in her honor and memory.
Marissa Perlman of New 4 WIVB Buffalo filed this story September 5, 2017
to help raise awareness. See it here.
Tanya’s Trot: Akron family raises money for a cure for epilepsy after daughters death
NEWS
Pame Conference
2011 National Epilepsy
Walk Highlights
With the right S.T.E.P.S., you can have stronger conversations with your healthcare
provider and work together to reach your goals. STEPS is an acronym meaning
Seizure
Treatment
Emotional Impact
Personal goals
Safety
Learn more by clicking here to a comprehensive guide for patients with epilepsy
NASR is a privately-funded, collaborative effort among medical professionals, advocacy
organizations and bereaved family members dedicated to better understanding and
preventing Sudden Unexpected Death in Epilepsy (SUDEP) – the most common cause
of epilepsy-related deaths. We facilitate the donation of brain tissue, DNA, and medical
records from those who have suffered from SUDEP and promote their use to advance
understanding and prevention. Studying Epilepsy-Related Mortality to Help Save Lives.
How to talk to your Healthcare Professional about Seizures.
National Walk for Epilepsy
National Walk for Epilepsy is held in March on the National Mall in Washington DC. Get involved.
Learn about the Epilepsy Foundation.
US Congress - House Resolution 298 (H.R.298)
US House Resolution 298 (Raising Awareness and Insight on Seizures and Epilepsy) was created to promote greater awareness and understanding about epilepsy among government agencies. The Epilepsy Foundation is actively looking for individuals to ask elected representatives to support this resolution. You can ask your representative to support it.
Seizure Dogs
They are an alarm system. They are helpers, protectors, and service providers. So-called seizure response dogs can be all these things and more.
Families hopeful new epilepsy legislation will raise awareness for SUDEP
Tammy Johannes and Erik Polkowski, Tanya's Trot organizers, attended the PAME Conference. This was an effort to gain better knowledge, networking connections and outreach for raising the awareness and understanding of epilepsy for and through the Trot. It was also to better realize the possible outcome that many are unaware of with epilepsy, SUDEP. Please learn more about this from the SUDEP Institute. Many new ideas, research efforts and dedicated individuals were met and spoken with. It is a great event full of promise and hope.
We were excited to receive an invitation to Epilepsy-Pralid, Inc.’s
32nd Annual Chocolate Ball ! The event raised over $120,000 for the
Epilepsy fight.Tammy Johannes was honored with the Wagner Award,
given in memory of long-time Epi-Pralid supporter Fredrick J. Wagner.
Delta Sonic was also honored for their challenge with the
Outstanding Partnership Award. Congratulations both on your efforts.
It has no limits, it knows no bounds.
Tanya's Team
Raising Epilepsy awareness, one step at a time
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Tanya's Team @ 2011-2020