We were lucky to catch up with Channing Seideman recently and have shared our conversation below.
Channing , we’re thrilled to have you on our platform and we think there is so much folks can learn from you and your story. Something that matters deeply to us is living a life and leading a career filled with purpose and so let’s start by chatting about how you found your purpose.
The dream was to be a doctor. But one diagnosis of refractory epilepsy and I
became the patient. Living in the gray not knowing when the next seizure will
be, how big it will be, how long recovery will take, means you can’t commit.
Some seizures I have are so small they don’t interfere with my workday at all.
Others I don’t even know I’m having because they are subclinical. However, I
can also have seizures that leave me bedridden for three to five days with the
headache from hell. In fact, there is not one job I’ve had where I didn’t have to
quit because I was simply too unreliable.
Living in the unknown is only half the challenge. The other half is the known. I
know I have increased seizure activity in the mornings. I know I have seizures
on a daily basis. I know I require a nap in the afternoon. And I know side
effects of medication are a constant battle.
So, when your day begins at noon followed by an hour-long nap at 3:00, on
the best of brain days, the reality is entering the workforce is not an option. I
don’t have a college degree, but I am educated, I have a skill set, experience,
and a unique perspective to bring to the table. I just don’t have a table to bring
it to. Many days there were tears from the simple feeling of being worthless.
Of not having a purpose.
You don’t always need a white lab coat to change lives. Living with treatment-
resistant epilepsy, my family and I rely on organizations like CURE Epilepsy,
the leading organization in funding breakthrough epilepsy research for a cure.
It was through CURE Epilepsy’s Champions Program that I found my purpose
when I started fighting for epilepsy warriors who are losing or have lost their
battle to epilepsy.
Taking my passion for horseback riding, and with the support of my parents
and barn family, in 2018, we held Team Channing’s first Call To Purple, which
brought “into the arena” epilepsy and the challenging circumstances faced by
those living with refractory epilepsy. It was supposed to be an awareness-
raising event, because Majestic Farm, where I train and board, was holding its
annual Turkey Trot horse show, and they asked me – since it was November,
and November is epilepsy awareness month – if I wanted to dedicate it to
raising awareness. Competitors wore purple, purple pumpkins and flowers
were placed as decorations, and we even had some painted ponies. There
was no intention of fundraising, yet, by day’s end we had raised $750.
Where I felt the most purpose that day was entering the arena with the names
of eight epilepsy warriors embroidered onto my saddle pad, including one
warrior from Austria and another from Australia, whose epilepsy is so severe
he has to wear a helmet 24/7. Horseback riding was no longer about me and
my competitive spirit, it was about fighting for those who – unlike me – are
losing or have lost their battle with epilepsy.
The next year, we held the show again but called it Dressage for a Cause,
and it benefitted CURE Epilepsy with a goal of ultimately funding a $100,000
research grant in an effort to find a cure. Over the next six years, Dressage for
a Cause expanded to include schwag bags and The Purple Raffle. And what
started as eight warriors on my saddle pad has grown to 25 epilepsy warriors
from Austria, Australia, India, Ireland, Canada, and across the United States.
We have now raised over $61,000 towards that goal.
Wanting to take epilepsy advocacy to the next level, Team Channing then lit
the University of Cincinnati Garnder Neuroscience Institute purple during
epilepsy awareness month for the past two years, thanks to the support of
Sunbelt Rentals, who have been amazing!
Appreciate the insights and wisdom. Before we dig deeper and ask you about the skills that matter and more, maybe you can tell our readers about yourself?
In 2024 CURE Epilepsy launched the Community Enrichment Program, a
sponsored internship providing people with refractory epilepsy the
opportunity to gain skills that will assist them in the workforce, and I had
the honor of being the inaugural participant. The program’s core focus is in
areas such as professional development, event planning, corporate giving,
marketing and communications, fundraising, and individual giving.
A large part of my internship has been dedicated to the CURE Epilepsy
Champions program assisting other epilepsy warriors and their families
organize their own grassroots events, which is yet another evolution of
fighting for epilepsy warriors.
CURE Epilepsy set me up for success and that made all the difference. My day
doesn’t start until noon as I have increased seizure activity in the mornings.
Working remotely and with a flexible schedule allows for the daily nap
needed as a result of seizures and side effects. What makes this job so
special for me is having a voice in a leading epilepsy organization and
working with families living with refractory epilepsy or the grief from having lost their loved one to
SUDEP (Sudden Unexpected Death in Epilepsy).
As someone who also enjoys science, being on the frontlines of
breakthrough epilepsy research has its own benefits! I’ve loved learning
about organoids!
Along with my internship, Team Channing is always looking for new ways
to grow, and in January we held our first farm-to-table fundraiser dinner.
Thanks to generous donations from local farmers and bakers, the culinary
team at Flamingo Drive in Milford transformed these fresh ingredients into
a five-course meal highlighting Italian cuisine.
Following the success of our first fundraiser dinner, and once again, thanks
to the amazing team at Flamingo Drive, Team Channing then held a
second dinner in June benefitting a local UC Health study, FORETELL, the
largest study ever done utilizing wearable technology. Led by my
epileptologist, Dr. Michael Privitera, and in partnership with Albert Einstein
College of Medicine and Garmin Health, FORETELL hopes to take data
collected by wearable technology and develop an algorithm that will
predict when people with epilepsy will have their next seizure, so they can
prepare accordingly.
If you had to pick three qualities that are most important to develop, which three would you say matter most?
Patience: Living life with refractory epilepsy is not a sprint, it’s a marathon.
The more you get to know your body, the greater understanding you have
of when and how much you can push, knowing it will likely set you back a
step or two. Patience means staying after school to talk with teachers, and
increasing meds slowy until reaching a therapeutic dose. It means thinking
outside the box for different ways you can build skills to add to your
toolbox, because luck is when opportunity meets preparedness.
Confidence: On a horse is where I feel most confident, but as much as I
would like, I can’t be on a horse 24/7. In 2010 I received my first seizure-
response dog, Georgie, from Canine Assistants. Georgie gave me
independence, and was a wet nose to wake up to instead of a stranger
with a stethoscope. She could get my meds and get help when needed,
and eventually our bond became so strong she started alerting to me. Still
living in the gray, Georgie gave me the confidence to live in the gray
knowing she would always be there to have my back. Now, ten years later,
I am with my second seizure-alert dog, Bishop, who also happens to be
Georgie’s great nephew!
Perspective: In the epilepsy world, my health is poor. In the refractory
epilepsy world, however, I simply can’t complain. I have spoken with too
many families who have lost their child from SUDEP, too many families
feeling simply helpless as they watch their loved one seize not just once a
day but hundreds of times daily, and too many kids getting portions of
their brain removed. With perspective comes humility.
Is there a particular challenge you are currently facing?
Arguably the number one challenge in finding a cure for epilepsy is ending
the stigma surrounding epilepsy. You can’t fund something most people
don’t talk about. When I was diagnosed with epilepsy I had never even
heard the word before! Epilepsy is misunderstood, shrouded in myth, and
too often kept a secret. If there was one myth that could be debunked, it
would be that there is more than one type of seizure. A seizure is not
limited to the tonic-clonic seizures dramatized in Hollywood. In fact, 60% of
people with epilepsy do not experience these types of seizures.
While we see wheelchairs, assistive devices, and prosthetics on a fairly
regularly basis, seizures are not something we see every day if ever –
unless we are looking for them – because sometimes a seizure is a small
twitch, jerk, or daydream, and others are only visible if an individual is
hooked up to an electroencephalogram (EEG). So how do we get
comfortable with something we don’t see and don’t talk about?
Team Channing hopes to bring epilepsy from the arena to a larger
audience through art, and we have our eyes set on Blink 2026, the largest
light and arts festival in the nation.
Contact Info:
- Website: https://linktr.ee/TeamChanning
- Instagram: @team_channing
- Facebook: @TeamChanningGeorge
- Linkedin: https://www.linkedin.com/in/channing-seideman/
Image Credits
Kelly Hall
so if you or someone you know deserves recognition please let us know here.
