Researching for a CURE Virtual Scavenger Hunt

Are you struggling to stay active while social distancing? Then join us for ReSearching for a CURE: A Virtual Scavenger Hunt! This fitness program is a fun way to connect with your family and friends while helping to fund research and raise awareness about the need for research funding.

You can sign up to be a part of this virtual globetrotting challenge as an individual or you can build a dream team and tackle this task together. Each person or team should aim to reach 260,000 steps toward our ultimate collective goal of accumulating 26 million steps – traveling a 26,000 mile route – following a virtual world map.

The program starts on July 20 and will run for four weeks.

Participation is simple:

STEP 1: Register as an individual or a team for $26. Upon registration, you will become a CURE Researcher Investigator. When you or your team join the scavenger hunt, you will work together as a part of the larger ReSearching for a CURE team to discover research discoveries our grantees have made in the pursuit of the cures for epilepsy.

STEP 2: Find Supporters. Reach out to your family and friends – encouraging them to participate by joining you and combining efforts, registering individually, and/or helping raise critical funds for epilepsy research by donating to your optional fundraising page.

STEP 3: Prepare to track your progress. Download the Charity Footprints app to track your steps or integrate any fitness tracking device including Fitbit, Garmin, AppleWatch, Google Fit, Misfit, or Strava. If you prefer not to use a fitness tracker, you can log your workouts manually. Here are a few examples:

This image describes how participants can earn steps. Light activities like walking and yoga earn 150 points per minute. Moderate activities like jogging and biking earn 200 steps per minute. Strenuous activity like Crossfit and running earn you 250 points a minute.

STEP 4: Start Researching (i.e. moving) Any physical activity of your choice will earn you steps, from walking around the block to biking your local trails! Each individual or team of CURE Research Investigators will perform their activity to accumulate 260,000 steps over a four-week period. Your search will begin on July 20th at CURE’s home in Chicago. As you accumulate steps, you will circle the globe, uncovering six CURE-funded research projects. At each location, you will receive a stamp in your Passport Book, along with information on the impact of this research.

STEP 5: Celebrate your findings! Pat yourself on the back – you just traveled the world from the comfort of your hometown! However, the scavenger hunt is not over until we hit the collective goal of 26 million steps.

Register and become part of the team today!

A collage of twelve photos featuring participants of this event.

Go the Distance for CURE – Megan Cullen’s 5K Virtual Run/Walk

Race Times

 

Thank you to everyone who turned out to Go the Distance for CURE!

Sean McCarthy, 28:19:00
Joey Freebairn, 24:23:00
Annmarie Charno, 24:23:00
Kerri Hertz, Biked 12 miles
Kayla McEachern, 31:15:00
John Turman, 67:00:00
Stephanie Roach, 67:00:00
Kat Salemno, 46:39:00
Caitlin Tobin, 69:39:00
Claudia Cuddy, 50:00:00
Lucinda Studley, 63:46:00
Francesca Passudetti, 56:09:00
Victoria Marciniak, 56:03:00
Megan Cullen, 42:00:00
Mike Cullen, 25:32:00
Lillian Smith, 28:43:00
Ben Hertz (and Hewey) 29:01:00
Monu Soni, 07:36:00
Joe McCarthy/Maryanne Gawlinski, 60:00:00

A collage of twelve photos featuring participants of this event.

 

Submit Your Finishing Time









Original Event Info

No matter where you are, CURE Champion Megan Cullen is challenging you to Go the Distance for CURE! Run or walk in this virtual race to raise critically-needed funds for epilepsy research while spreading positivity and awareness.

Racers who sign up by Wednesday, 5/13 will receive an exclusive virtual race t-shirt. After the race, submit your time using the form below!

Why Megan Organized this Virtual Race

Megan had a regular childhood including playing with friends, working hard at school, and bossing her little brothers around. She was always organized and a type A personality. That is why it was a surprise in her senior year of high school that she totally lost control of her body. She started having what she and her parents not so affectionately called “the shakes.” It always happened in the morning. She would drop or even throw something she was holding, her leg muscles sometimes buckled, and she would let out what sounded like a loud gasping hiccup. She had always relied heavily on a good night’s sleep and figured this was her body’s way of warning her she had not slept enough.

Megan and her parents addressed this with her pediatrician, who quickly sent her for a neurology consult. The neurologist took her history, sent her for an EEG and concluded that she fit all the criteria for Juvenile Myoclonic Epilepsy with the exception of never having had a seizure. He defined her “shakes” as myoclonus and said they were triggered by lack of sleep.

Epilepsy and seizures were both scary and unfamiliar terms to Megan and her family. Megan continued on, unsure of the impact of this mystery. Until that third week of college, when she was struggling to get her hair into a ponytail and the next thing she could remember, she was surrounded by roommates and EMS from her college.  That was it, she officially had epilepsy. She was nervous and scared as were her parents (200 miles away.) They worked with her neurologist to get her medication and luckily she had so many forms of support, she was bound to get through this.

College proved to be a difficult time. Given that her seizures were triggered by lack of sleep and some students were not always respectful of quiet hours, she did have many more seizures throughout those years. Her neurologist helped her to find a better medication and years later found a perfect one for her. Now, Megan’s epilepsy has been successfully controlled. She came through it thanks to love, support, medication and luck!

Unfortunately, there are many people with epilepsy who never find that perfect medication. There are people who get injured during a seizure or who may not even survive their condition. CURE is here to research solutions for them. CURE is keeping hope alive for those who struggle day in and day out.

Logo for Ella's Race featuring inspiring words in a heart shape

The 2020 Ella Mile

Introducing the 2020 Ella Mile – Sunday August 23rd, 10 am
to benefit Citizens United for Research in Epilepsy (CURE) 

Update, 8/31/2020

Thank you from the bottom of our hearts to all those who made this event truly special. Your support continues to inspire us, even in the most challenging times.

Three images, The first is a group of children wearing Ella Mile shirts. The second is of Ella herself standing behind a sign that says, "Ella, your smile is contagious." The third of of Ella and her family walking.

______

Please sponsor a sign and/or donate!

To recognize the 1 in 26 people that will develop epilepsy in their lifetime, we are placing signs every 26 feet along a one-mile route in our neighborhood.  These signs are available for sponsorship at $100 each and then get to be customized by YOU! They can have messages of support, encouragement, epilepsy facts, etc. – you get to customize it!

Not feeling creative or wish to stay anonymous? We’ll be happy to fill your sponsored sign out with some messages of encouragement for you!

Details

On Sunday August 23rd, Ella will walk a one-mile route and see all the signs we have posted!  We would love for all of her amazing supporters to line the sidewalk and cheer her on, wearing a past Ella’s Race t-shirt if you have one.  There will be NO formal program, refreshments, silent auction, etc. this year due to COVID-19. After Ella has walked the mile, we invite you to walk as well, and read all the amazing messages to her.

Location

The one-mile route will begin at the 500 block of N Catherine Ave in La Grange Park, head North on Catherine to Monroe, head west to Spring, head South on Spring to Woodlawn, back east of Catherine, and finally North on Catherine to the finish!

About Ella’s Mile

Ella and her mother running among friends all wearing purple shirts at Ella's Race in 2019

Ella, who is the inspiration for this race

First off, thank you for coming to visit our site! Our 10-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.

Ella smiling and playing with friends at Ella's Race 2019

We hope to see you there!

Unfortunately, epilepsy’s reach extends far beyond just Ella, affecting 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. Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. CURE 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 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, and Blake is also a Board Member for the organization. We are very passionate about this cause and believe CURE 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 mile for illness and injury which may result directly from my participation.  I further state that I am in proper physical condition to participate in this event. I also give permission for the use of my name and/or picture in any public account of this event. No refunds will be issued.

Current total: $59,117

ORIGINAL GOAL: $50,000

Ella's Race heart logo with a donation tracker tracker

Honor Roll

  • Catherine Abuallan
  • Debbie Adams
  • Jessica Andrews
  • Anonymous
  • Mary Atseff
  • Bennett Baranowski
  • Bridgid Bergstrom
  • Claire Biebel
  • Laurie Blackmon
  • Regina Blackstone
  • Vanessa Blasco
  • Rosanne Browne
  • Zac & Nicole Buikema
  • Carrie Cahill
  • Monica Callahan
  • Melissa Cepek
  • Rachelle Jervis Chopra
  • David A. Cox
  • Blake and Shalee Cunneen
  • Jack Cunneen
  • John P. Cunneen
  • Pat & Jay Cunneen
  • Anna Curran
  • Jennifer Curry
  • Kelly Cusack
  • Rachel Dahl
  • Megan Davidson
  • Sara DeCoste
  • Catherine Dee
  • Dental Loft
  • Lori Deskovich
  • Melissa Diebold
  • Jillian Dryfoos
  • Jessica Duer
  • Bill Eggebrecht
  • Lauren Enright
  • Beth Fabiano
  • Tanya Fishel
  • Sharon Flaim
  • Sonia Fonseca
  • Recia Frenn
  • Mary & Gene Gager
  • Wendy & Jim Garber
  • Matthew Garman
  • Lily Garza
  • Sherina Gerardi
  • Susan Goldby
  • Tarra Grisz
  • Ryan Gruhlke
  • Kimberly Hare
  • Ann E. Herder
  • Cathy Hernandez
  • Kathleen Hickey
  • Jennie Hoekstra
  • Jenny Hopkins
  • Kathy & Joe Horvath
  • Bob Hovanes
  • Tiffany Howard
  • Katie Janak
  • Stacie Janak
  • Molly Jandrain
  • Megan Janssen
  • Erin Jordan
  • Lisa Katzenberger
  • Barb Keller
  • Ashley Kennedy
  • Jessica Kiley
  • Jackie King
  • Jennifer Kovacs
  • Jenny Krasnowski
  • Bethany Kural
  • Nikola Lambert
  • Cathy and Jim Landman
  • Jennifer LaRocque
  • Angela Larson
  • Carol Larson
  • Emily Larsen
  • James Lee
  • Sarah Lorenzi
  • Kristin Love
  • Lovell Family
  • Aileen Lysaught
  • Nancy Madden
  • Tricia Maier
  • Nicole M. Marth
  • Evelyn M. Martinez
  • Herb L. Massin
  • Bryan McGill
  • Kathy McKenna
  • Kevin Melvin
  • Nancy Melvin
  • Jacquelyn Metoyer
  • Midwest Radon Services
  • Heather Minchella
  • Michelle A. Mirza
  • Kristin Michel
  • Kelly A. Moran
  • Katie Mulcahy
  • Elizabeth Newman
  • Megan Novak
  • Michael Moore
  • Dawn Gard O’Connell
  • Jennifer Ogden
  • Outdoor Kid’s Yoga Class
  • Carolynne Ozanich
  • Matthew Patton
  • Tara Petersen
  • Brian & Martha K. Polomsky
  • Barbara Riccio
  • Vanessa Robertson
  • Jean Rosenzweig
  • Liz and Jason Roudabush
  • Joseph Sambucaro
  • Adlija Santarelli
  • Andrea Schildgen
  • Bre Schneider
  • Lauren Schrero
  • Stephanie Shimerdla
  • Sharon Sims
  • Samantha Sordyl
  • Lindsey A. Sorensen
  • Caitlin Spain
  • Beth Stamer
  • Megan Styler
  • Jonathan Suttle
  • Codi Titus
  • Mia Tritch
  • Mandy Vadbunker
  • Brian Van Valey
  • Lauren Vaupell
  • Christal Virgilio
  • Heather Vitell
  • Susan C Waggener
  • Nora Wagner
  • Joseph Washburn
  • Janelle Watanabe
  • Jennifer L. Webb
  • Margaret Yesko
  • Sara Goggin Young

Total donations raised and Honor Roll updated weekly.

 

Orange Theory Fundraiser

Olivia is 11 years old and was diagnosed with epilepsy in March of 2019. It was the scariest time in her family’s life and her parents don’t want any other families to have this experience.

Now Team Olivia will RUN…ROW…and LIFT for a cure for epilepsy!

They ask for your support. Visit their team page to donate in honor of Olivia!

Dressage for a Cause

Saddle up for a wonderful day at the stables with Dressage for a Cause, a fundraiser for CURE!

CURE Champion Channing and Majestic Farms are hosting this event as part of the annual Turkey Trot Horse show. Channing had her first seizure days before her very first horse show. Instead of competing, she underwent a CT scan just a few days before her 10th birthday.

Channing’s love of horse riding continued and she was eventually able to compete. After countless anti-seizure medication combinations, her doctors arrived at a cocktail of meds that control the tonic-clonics. But now, 16 years into epilepsy, it’s the side-effects of the meds that can sometimes take days to recover from.

And that’s why Channing is taking her fight into the arena with Dressage for a Cause. Dressage is a true test of horse & rider that has its roots in the military, which is fitting, since Channing is a fierce epilepsy warrior in the arena fighting for a cure!

The goal is to raise $2,500! Donations are always welcome, and we now have sponsorship opportunities available (message TeamChanning or Majestic Farm on Instagram or Facebook to become a sponsor):

Baby Carrot Sponsors– Sponsor as many purple carrots as you like for only $1/carrot, or a bunch of 6 for $5! Horses love carrots, and we want to give the horses at the C.U.R.E. horse show a lot of purple-carrot-love! We’re sowing seeds for a cure in July for a purple carrot harvest in November during Epilepsy Awareness Month!

Carrot Cake Sponsors – There are over 50 different classes (divisions) at the November 9- 10 CURE Epilepsy Horse Show. Sponsorships are $25 each on a first come, first served basis.
Want to be a sponsor? Great! Want to add a class to sponsor? No problem! Just message TeamChanning or Majestic Farm on Instagram or Facebook!

Carrot Top Sponsors – Corporate sponsorships are now available! Want to be a sponsor? No problem! Just message TeamChanning or Majestic Farm on Instagram or Facebook!

Find a Cure Title Sponsorship – $1,850 includes Title sponsorship (‘Your Company Name’ presents Dressage for a Cause: a Fundraiser for CURE); 5 of your company banners (supplied by you) prominently displayed in the main show arenas and show grounds entrance; Your company name as official sponsor in all print and advertising; Your company name and logo on all competitor ribbons ($850 for custom ribbons, $1,000 to CURE!).

Quality of Life Sponsorship – $750 includes 3 of your company banners (supplied by you)prominently displayed in the main show arenas and show grounds entrance; Your company name and logo in all print and advertising; Your company name and logo on all competitor numbers ($100 for custom numbers, $650 to CURE!).

End the Stigma Sponsorship – $100 includes 2 of your company banners (supplied by you)prominently displayed in the main show arenas and show grounds entrance; Your company name and logo in all print and advertising.

Facebook Fundraising

#GivingTuesday

Facebook FundraisingJoin the #GivingTuesday movement on Tuesday, December 3!

Support cutting-edge epilepsy research by starting a Facebook Fundraiser or donating to one on #GivingTuesday and show your friends and family just how important finding a cure is to you.

Processing fees are waived for donations made to CURE through Facebook, ensuring 100% of your gift supports CURE’s mission to find a cure for epilepsy, by promoting and funding patient-focused research.

Your gift on #GivingTuesday makes double the impact! A generous donor will match all gifts made on December 3 up to $25,000.

Epilepsy Awareness Day at Disneyland

Let’s paint Disneyland purple at the 7th Annual Epilepsy Awareness Day at Disneyland Resort! This family-friendly event on November 4-6 unites epilepsy patients, families, doctors, researchers, and organizations.

At the CURE booth, you can learn about the latest developments in epilepsy research and win the opportunity to share your story on stage!

Each expo day, CURE will interview researchers and clinicians from around the country. They will share their insights on a wide range of topics in the field of epilepsy. Drop by our booth in the morning to see the schedule of who will be speaking when.

Additionally, share your story about how a cure for epilepsy would change your life, and be entered to win the chance to be interviewed live! Each day, five lucky people who’ve shared their “When You Wish Upon A CURE” story will be selected to be filmed live.

CURE will also host two informational sessions featuring a panel of expert clinicians and researchers in the field of epilepsy.  This will allow attendees an opportunity to engage directly with the panel through an interactive Q&A portion.

The first session titled “The Changing Landscape: New Epilepsy Therapies” will cover the latest research in new treatments for epilepsy and will be held on Monday, November 4th from 3:30pm to 4:30pm in the Sleeping Beauty Pavilion .  Our experts will cover topics such as CBD use, rescue medications that have recently been approved and those in the pipeline, devices, and new research in surgical approaches to treating epilepsy.

The second session titled “Clinical Trials for New Therapies: Understanding Your Role” (Tasia will modify) will be held on Tuesday, November 5th from 10:30am to 11:30am in the Sleeping Beauty Pavilion. This session will cover how the clinical trial process works from start to finish and beyond, explain commonly used terms in clinical trials, talk about issues such as privacy and confidentiality that participants should be aware of, and discuss how the patient community can lend their voice to the process. You will also have the opportunity to hear from people who have participated in trials.

Both sessions will be 60 minutes long and will include a Q&A session where you will have the opportunity to ask questions such as:

  • Are rescue meds only for those individuals who experience seizure clusters?
  • Is it safe to use CBD supplements?
  • What are the benefits and risks associated with participating in clinical trials?

At the conclusion of each session, you will have time to interact with the panelists and/or the CURE team. We hope that you can join us!

Chicago Half Marathon/5K

CURE is proud to be a partner of the 2019 Chicago Half Marathon/5K here in our hometown, and is inviting you to join our team!

As a part of Team CURE, you’ll be a CURE Champion who helps us race to end epilepsy.  100% of Team CURE fundraising efforts support our mission to find a cure for epilepsy, by promoting and funding patient-focused research.

Team CURE members who meet these fundraising levels receive:

  • Patron of Discovery (Raise $250 and above)
    • $10 off race entry
    • Personalized Team CURE online fundraising page
    • Team CURE race hat
    • Invitation to race weekend activities and cheering fans along the course
    • Coaching and training plans via email
    • Prizes from fundraising challenges
  • Patron of Research (Raise $500 and above)
    • Team CURE performance race shirt
    • $10 off race entry
    • Personalized Team CURE online fundraising page
    • Team CURE race hat
    • Invitation to race weekend activities and cheering fans along the course
    • Coaching and training plans via email
    • Prizes from fundraising challenges
  • Patron of Determination (Raise $1000 and above)
    • Team CURE performance race jacket
    • Team CURE performance race shirt
    • $10 off race entry
    • Personalized Team CURE online fundraising page
    • Team CURE race hat
    • Invitation to race weekend activities and cheering fans along the course
    • Coaching and training plans via email
    • Prizes from fundraising challenges
  • Patron of Hope (Raise $2500 and above)
    • Free entry into the 2019 CURE Benefit, where past entertainers include Eddie Vedder, Paul Simon, John Stewart, and Barack Obama
    • Team CURE performance race jacket
    • Team CURE performance race shirt
    • $10 off race entry
    • Personalized Team CURE online fundraising page
    • Team CURE race hat
    • Invitation to race weekend activities and cheering fans along the course
    • Coaching and training plans via email
    • Prizes from fundraising challenges

Registration Fees:

  • Half Marathon:  $105 until July 26
  • Life Time 5K:  $40 until July 5

To register, email Brandon Laughlin at events@www.cureepilepsy.org

Fitzgerald Physical Therapy Golf Outing Fundraiser

CURE Champions Megan Cullen and Garrett McCarthy are co-hosting the Fitzgerald Physical Therapy Golf Outing Fundraiser. Megan was diagnosed at the age of 18 and battled epilepsy for years before gaining seizure freedom through medications.  She has now been seizure-free for nearly 10 years.

Megan and Garrett are co-hosting the tournament in collaboration with Fitzgerald Physical Therapy Associates to raise money for epilepsy research and spread awareness of this condition that effects so many.

The sign-up deadline is April 18.

Please contact Megan or Garrett to register to participate:
Megan Cullen 781-307-5678
Garrett McCarthy 781-307-5677

A portion of all registration fees will benefit CURE. If you cannot attend, but would like to donate, visit: http://cureep.convio.net/goto/Golf

Altitude Jump-a-thon

CURE Jump-A-Thon

Go ahead and jump at Altitude Trampoline Park’s first-ever charity event, benefiting CURE!

All families are welcome to join us to raise funds for epilepsy research on Sunday, May 19th from 10am-1pm. In addition to access to all 14 of Altitude Chicago’s trampoline park attractions, there will be a designated area on the trampolines as well as a sensory room for those individuals with limited abilities to continue to enjoy and participate in the event.

We are honored to collaborate with Kelly and Miguel Cervantes who are passionate advocates for epilepsy awareness in Chicago because of their daughter, Adelaide. They will be attending the event with Adelaide and their son, Jackson.  Miguel, who also plays Alexander Hamilton in Hamilton will be performing a few songs for our guests, as well.

Complimentary food and beverage will be provided by local food trucks throughout the event.

This event is open to the public. Purchase tickets ahead of the event online or at Altitude on the day of the event.

All attendees, including both parents and children, require a ticket for the Jump-A-Thon.
Ticket prices:
$20 – Children (2-6 years)
$35 – Children (7 years and older) and Adults

100% of the proceeds from ticket sales benefit CURE.