Ella’s Race 2022–Sunday, August 21st
to benefit CURE Epilepsy

Please walk or run with us!

Run/Walk registration: A donation of $25 per runner/walker is suggested, and that includes your walk T-shirt to wear that day!

Donate: Can’t attend but still want to help us cure epilepsy? Make a tax-deductible donation!

Event Details: On Sunday, August 21st, we will have a 2.6 Mile Fun Run AND a one-mile walk through La Grange Park to raise awareness and funds for epilepsy research! 1 in 26 people will develop epilepsy in their lifetime, and our 2.6-mile fun run route brings awareness to this fact. This is a family-friendly event, with music, snacks, and lots of smiles!

The event will begin at 10 am at the 500 N. Catherine block in La Grange Park. The race route will be closed for the event, so we encourage parking on Kensington or Ashland. Additional details for the event will be emailed to participants prior to race day!

Exciting News!

Epilepsy is frustrating and difficult to treat for many reasons, not the least of which is all the different ways it can manifest. Ella’s primary form of epilepsy, epileptic spasms, is particularly difficult because it is rare and there is very little research on it. In all the second (3^rd/4^th/5^th/etc.) opinions that we have solicited, one refrain is common amongst the doctors, there just is not that much out there on epileptic spasms. With this as motivation, we have worked with CURE Epilepsy to set up a special $500k grant to fund research on epileptic spasms specifically. This year, all money we raise in Ella’s race will go to fund this grant!  We are so excited for this amazing opportunity!

About Ella’s Race to CURE Epilepsy

Ella, who is the inspiration for this race.

First off, thank you for coming to visit our site! Our 12-year-old daughter Ella has severe epilepsy, and we’re raising money in her honor to help support research in epilepsy. Ella was first diagnosed with epilepsy days after her first birthday. Since that day we have tried approximately 20 different medications, special diets, prolonged hospital stays, surgical consults, second/third/fourth/etc. opinions all in hopes of bringing her seizures under control. Unfortunately, she still has frequent seizures that, when combined with all the medications she takes, have significantly slowed her development. Yet despite the seizures, meds, hospital stays, blood draws, and therapy appointments, Ella’s indelible spirit remains untouched. She continues to be our driving force, attacking each new challenge with a smile. You can learn more about Ella here.

Unfortunately, epilepsy’s reach extends far beyond just Ella, affecting over 3.4 million Americans, with 200,000 more cases being diagnosed each year. Approximately 50,000 deaths occur from seizures and seizure-related causes in the U.S. each year. CURE Epilepsy is the leading nongovernmental agency fully committed to funding research in epilepsy. CURE Epilepsy funds research grants for young and established investigators around the globe, and we believe these are the people who are going to be able to someday cure our Ella. Finding a new and novel treatment and changing technology is currently our only hope for Ella to become seizure-free. CURE Epilepsy is constantly at the forefront of the epilepsy research community, and they are also very fiscally responsible with all the contributions they receive. We are proud to be volunteers for CURE Epilepsy, and Shalee is also a Board Member for the organization. We are very passionate about this cause and believe CURE Epilepsy is the best agency out there to help us and Ella.

Waiver: In consideration of acceptance of this entry, I waive any and all claims for myself and my heirs against officials and sponsors of Ella’s Race for illness and injury which may result

We hope to see you there!

 

 

Race to fund epilepsy research when you join Team CURE Epilepsy at the 2022 TCS New York City Marathon! Represent the 3.4 million Americans who are impacted by epilepsy at this iconic race through all 5 boroughs. 

Team CURE Epilepsy members, will receive:

• Personalized Team CURE Epilepsy online fundraising page
• Team CURE Epilepsy performance shirt & swag bag
• Team social coordinated closer to the event
• Family and friend participation in the Charity Cheer Zone along the course
• Encouragement through inspirational stories and the latest research discoveries in epilepsy
• Special recognition and prizes for top fundraisers

At this time all of our entries have been filled. Check our Event page for more Team CURE Epilepsy events.

Looking for free training resources? TCS New York City Marathon has you covered! Head to their website and view their running resources.

All available slots are currently filled. If more slots become available, we will update this page with registration information.

Looking to challenge yourself and help raise funds for a good cause? We are proud to be a partner with the 2023 Bank of America Chicago Marathon and have secured a limited number of charity spots for runners looking to explore our beautiful hometown neighborhoods, along an iconic 26.2-mile route.

As part of Team CURE Epilepsy, all persons who meet our fundraising requirements will receive:

• Personalized Team CURE Epilepsy online fundraising page
• Team CURE Epilepsy performance shirt & swag bag
• Team social coordinated closer to the event
• Family and friend participation in the Charity Cheer Zone along the course
• Encouragement through inspirational stories and the latest research discoveries in epilepsy
• Special recognition and prizes for top fundraisers

On January 7th, 2023, Joey’s Song Benefit Concert is going to be their biggest and most adventurous benefit concert to date!

There will be an auction with one-of-a-kind items including signed guitars from the performers and VIP experiences. Check back soon for more details.

For more information on the benefit concert visit:
www.joeyssong.org

#TIME2CHANGE

Wednesday October 20th is SUDEP Action Day, a global event whose aim is to bring the epilepsy community together to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and the associated risks SUDEP has on those living with epilepsy. Not everyone with epilepsy is informed about SUDEP, which can increase the chance of worsening seizures, injury or early death.

Join us throughout the week beginning October 18 for important information about SUDEP from researchers, community members, and more. We will be adding SUDEP curated content each day of the week. Please encourage your friends and families to share this information. You can also follow us on Facebook, Instagram, and Twitter for all updates regarding SUDEP Action Day 2021.

It’s #Time2Change what people know about SUDEP, so they can reduce the risk to their loved one living with epilepsy. 

Risks Factors and Ways to Mitigate Risk

Far too many people are unaware of SUDEP, its risk factors, and ways to mitigate these risks.

Help us spread the word and initiate critical conversations about this awful consequence of epilepsy. Share these infographics with your friends and family by posting them on social media.

Webinar | SUDEP and Breathing

A webinar that provides an introduction to basic concepts and terminology for how the respiratory system functions. It also provides evidence for breathing dysfunction caused by seizures and reviews the data for breathing dysfunction as a potential cause as well as a marker for SUDEP, and a possible means to intervene and prevent SUDEP.

Seizing Life Podcast

An important Seizing Life episode featuring Dr. Elizabeth Donner, Staff Neurologist and Director for the Epilepsy Program at Toronto’s Hospital for Sick Kids. Dr. Donner was a 2009 CURE Epilepsy grantee whose research helped identify that the incidence of SUDEP in children with epilepsy was much higher than previously thought, and was actually 1 in 1,000 which is the same as it is for adults.

Dr. Elizabeth Donner provides an overview of SUDEP, including what we currently know about SUDEP, what are the risks and ways to mitigate risks associated with SUDEP, and what research is discovering that can help us find a cure for this devastating outcome of epilepsy.

Webinar | SUDEP and the Heart

Thursday October 21st we had a free live webinar on how inherited neuronal or cardiac diseases may lead to electrical disturbances in both the brain and heart, how altered cardiac function may lead to SUDEP, and why it is critical for the epilepsy community to take a holistic approach to fully understand biological changes that ultimately cause SUDEP. 

The Webinar stream will be available Wednesday October 27th.

Discovery | Dr. Franck Kalume

Research discoveries for SUDEP identified by CURE Epilepsy grantee Dr. Franck Kalume, an Associate Professor in the Departments of Neurological Surgery, Pharmacology, and Global Health at the University of Washington in Seattle.

Learn More About SUDEP

CURE Epilepsy CARES (Conversations About Research in Epilepsy & Seizures) is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy. Join us as clinicians answer your questions about cutting-edge research and epilepsy treatments.

This CARES event featured epilepsy experts from around the San Francisco area as this event is typically regional, however, this event was broadcasted nationally so that anyone could participate.

Please watch the full CURE Epilepsy CARES virtual event below:

• A panel discussion, featuring epilepsy experts and moderated by CURE Chief Scientific Officer Dr. Laura Lubbers. The panel will discuss the latest in epilepsy research and what it means for patients and families.
• Information about community resources for epilepsy.
• Q&A sessions and small group discussions with epilepsy experts. Capacity is limited for discussions; priority will be given to early registrants.
• Information on cutting-edge therapies and treatments.
• The opportunity to engage with other families and advocacy groups in the epilepsy community.

Opportunities to ask the expert panel your questions about topics, such as:

• Current Treatments & Emerging Therapies
• Surgical Options & Devices
• Clinical Trial Participation
• Managing Your Epilepsy: SUDEP, SAP’s, & Side Effects
• Other topics related to advancements and research in epilepsy

Speakers:

• Brenda Porter, MD (Stanford University)
• Adam Numis, MD (UCSF)
• Michael Rogawksi, MD, PhD (UC Davis)
• Martha Morrell, MD (Stanford University)

Location: Virtual Zoom

FAQs

How can I contact the organizer with any questions?
Please contact us at events@CUREepilepsy.org or 312-255-1801. If you need to contact the organizer on the day of the event, you must email events@CUREepilepsy.org.

CURE Epilepsy CARES (Conversations About Research in Epilepsy & Seizures) is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy. Join us as clinicians answer your questions about cutting-edge research and epilepsy treatments.

Please watch the CURE Epilepsy CARES NYC event below:

• A panel discussion, featuring epilepsy experts and moderated by CURE Chief Scientific Officer Dr. Laura Lubbers. The panel will discuss the latest in epilepsy research and what it means for patients and families.
• Information about community resources for epilepsy.
• Q&A sessions and small roundtable discussions with epilepsy experts.
• Information on cutting-edge therapies and treatments.
• The opportunity to engage with other families and advocacy groups in the epilepsy community.

Opportunities to ask the expert panel your questions about topics, such as:

• Current Treatments & Emerging Therapies
• Surgical Options & Devices
• Clinical Trial Participation
• Managing Your Epilepsy: SUDEP, SAP’s, & Side Effects
• Other topics related to advancements and research in epilepsy

Speakers:

• Zach Grinspan, MD (Weill Cornell)
• Padmaja Kandula, MD (Weill Cornell)
• Nathalie Jette, PhD (Mt. Sinai)
• Cigdem Akman, MD (Columbia University)
• Louise Bier, MS, CGC (Columbia University)

Location:

Weill Cornell Medicine campus
Belfer Research Building Room BB 302
413 East 69th Street
New York, NY 10021

Directions

FAQs

What about COVID?
We will be continually monitoring the COVID-19 numbers in New York City and will follow all CDC recommendations and guidelines. Only fully vaccinated individuals will be able to attend the event. We will notify all registrants if conditions require that we shift the event to a virtual platform.

Will meals be provided?
No. Due to the ongoing COVID-19 pandemic, this specific event will not have a meal provided.

How can I contact the organizer with any questions?
Please contact us at events@CUREepilepsy.org or 312-255-1801. If you need to contact the organizer on the day of the event, you must email events@CUREepilepsy.org.

Can my guests register onsite?
YES! Staff will be available to register anyone onsite.

The CURE Epilepsy Champion program has been an integral part of our organization’s fundraising for over 15 years. These critical research dollars ensure that CURE Epilepsy funds the most innovative science from the world’s leading epilepsy researchers.

At the CURE Epilepsy Champion Fundraising Summit learn strategies from our most successful CURE Epilepsy Champions and discuss ways to be involved with CURE Epilepsy, even if you don’t want to set up your own event. At this event we will:

• Illustrate the impact of the program
• Share fundraising secrets from families who have held successful events
• Highlight fundraising best practices to help spark your own fundraising event ideas
• Provide time for Q&A

Whether you are looking to create your first CURE Epilepsy Champion event OR you’re a current Champion looking to upgrade or adjust your existing event, this Summit is the event for you.

CURE Epilepsy is proud to announce that we are an Official Charity for the 2021 Los Angeles Marathon presented by ASICS.  Join us in one of two marathon events as we run for a cure for epilepsy.

Race Options

CHARITY CHALLENGE

Not ready to run a full marathon? Run or walk the second half of the marathon in the Charity Challenge, a 13.1 mile course starting at Sunset & Fairfax. This half marathon experience is only available to Official Charities of the LA Marathon — partners such as CURE Epilepsy! Spots are limited so sign up early.

2021 LOS ANGELES MARATHON * PRESENTED BY ASICS

The 2021 Los Angeles Marathon presented by ASICS will begin at Dodger Stadium and finish at Avenue of the Stars in Century City. The course winds 26.2 miles through Downtown Los Angeles, Little Tokyo, Hollywood, and more.  Check out the course here.

For more information or if you’re interested in running for CURE Epilepsy, please contact Brandon Laughlin at Brandon.Laughlin@cureepilepsy.org or 312-589-5569

As part of Team CURE Epilepsy, all persons who meet our fundraising requirements will receive:

• Complimentary race entry (valued up to $170 + fees)
• Official CURE Epilepsy performance shirt & Team CURE Epilepsy runner’s medal
• LA Marathon or Charity Challenge Finisher’s Medal & LA Marathon shirt
• Course support on race day
• Training and fundraising support to help you meet your personal goals, no matter what race you choose

You’ll also have the opportunity to network with new friends & hear inspirational stories from those affected by epilepsy