As an epilepsy advocate, you’re going to interact with a lot of people and that’s great! But there are so many sources of information out there that it’s easy to get facts confused. Here’s a list of key talking points and statistics (provided by the Center for Disease Control) to use when spreading awareness:
- Epilepsy is a brain disorder that causes seizures. Seizures are abnormal activity in the brain. These seizures are not caused by a temporary or underlying medical condition such as a high fever or extremely low blood sugar. An individual is diagnosed with epilepsy when they have had two or more unprovoked seizures OR one seizure with the likelihood of having more.
- 150,000 people in the US are diagnosed with epilepsy each year, and 3.4 million Americans are living with active epilepsy. This means they are currently diagnosed and taking medication to control seizures and/or had one or more seizure in the past year.
- 110,000 people in Eastern PA are currently living with epilepsy.
- 1 in 26 people will have epilepsy at some point in their lifetime, meaning they will be diagnosed, but may find medication or treatment to control it.
- There are many different kinds of seizures that can present in all different types of ways. Some seizures may look like a staring spell while other seizures can cause a person to mumble, chew or smack their gums. Some seizures may cause a person to wander or be unaware of their surroundings, while others may cause a person to collapse or shake. Some seizures only occur when an individual is sleeping and are referred to as nocturnal seizures.
- Seizures may last only a few seconds or up to a few minutes.
- 1/3 of people diagnosed with epilepsy live with uncontrolled seizures because there are no available treatments or medications that work for them.
- There is no cure for epilepsy but there are a wide range of treatments. Treatments for epilepsy vary and include medicine, surgery, special diets, medical implants and devices.
Q: I’ve heard I should put something like a wallet in a person’s mouth while their having a seizure because they might swallow their tongue. Is that true?
A: No, a person having a seizure cannot swallow their tongue. Never put something in their mouth—it could actually cause them to choke.
Q: Can someone with epilepsy drive?
A: The rules vary from state to state, but generally someone needs to be seizure free for a certain amount of time in order to drive. In Pennsylvania you must be seizure free for six months. The EFEPA can help someone with epilepsy find transportation assistance if they cannot drive.
Q: Can someone with epilepsy work?
A: Yes! People with epilepsy can work just the same as anyone else. They may need accommodations in the workplace to help make sure they are safe, and that right is protected under the Americans with Disabilities Act.
Q: Is epilepsy contagious?
A: No, epilepsy is not contagious. You cannot “give” someone epilepsy the way you can the common cold.
Q: Can people with epilepsy play sports and exercise?
A: Yes, but they may need to take special precautions. Exercise is rarely a trigger for a seizure, but it’s always a good idea to be safe. Some smart tips are to have a workout buddy or wear a medic alert bracelet.
Q: Can someone die from epilepsy?
A: Although most people with epilepsy can live full, healthy lives, death due to having a seizure is a possibility. The risk of dying for a person with epilepsy is 1.6 to 3 times higher than that for the general population. During a seizure, a person could suffer a brain injury or other traumatic injury.
Another complication is Sudden Unexplained Death in Epilepsy (SUDEP), which is when someone with epilepsy dies unexpectedly and no other cause of death is found. SUDEP occurs in 1 out of 1,000 persons with epilepsy.
There are so many misconceptions surrounding epilepsy that it’s easy to accidentally add to the negative image of the disorder merely by making the wrong word choice. We’re here to help with that! When talking about epilepsy, here’s a list of words we try to avoid using:
Like all individuals living with disabilities, people with epilepsy often prefer not to be labeled or defined by their diagnosis, such as “S/He’s an epileptic.” The reasoning can be summed up by the statement, “epilepsy is what I have, not what I am.” The preferred terminology is “person living with epilepsy” or “child living with epilepsy.” Use of epileptic as an adjective in other situations, such as “an epileptic seizures,” is appropriate.
Although the term “fit” is commonly used by medical professionals outside of the U.S., most individuals with epilepsy in the U.S. are particularly sensitive to the description of seizures as fits. The feeling is that this word connotes mental derangement or loss of emotional control. Some associate the word with the symptoms of rabies in animals. Seizures, or, in some cases, convulsions, is preferred. Convulsion is a more specific term that more aptly describes a single type of seizure involving muscle contractions throughout the entire body. Not all epileptic seizures are convulsions.
We use the word “controlled” a lot in our community, but as it relates to whether or not an individual’s seizures are controlled or not. Seizures are controlled with medication and treatment, persons with epilepsy are not. “Controlled epileptic” in particular should always be avoided as it gives the impression that the person needs to be restrained from willful, aggressive behavior.
Did you know that 1 in 10 people will experience a single seizure in their lifetime?
Learning basic seizure first aid can help you be prepared to respond to seizures safely and appropriately. Not all seizures look the same. But there are simple steps you can use for most seizure-types. Download the flyers, familiarize yourself with #StaySafeSide, and share with your network!
Purple Lights and Ribbons
For the month of November, be on the lookout for these buildings to be lit up purple in honor of National Epilepsy Awareness Month!
All Month Long
Independence Seaport Museum
211 S Christopher Columbus Blvd, Philadelphia, PA 19106
Philadelphia College of Osteopathic Medicine
4170 City Ave, Philadelphia, PA 19131
Wind Creek Bethlehem Blast Furnaces
77 Wind Creek Blvd, Bethlehem, PA 18015
All Month Long
November 1st, 2nd, & 3rd
101 Founders Way, Bethlehem, PA 18015
November 16th, 17th & 18th
Cira Centre and FMC Tower
2929 Walnut St, Philadelphia, PA 19104
One & Two Liberty Place
1650 Market St, Philadelphia, PA 19103
Community Events & Fundraisers
First Friday Fundraiser
212 Mill St, Bristol, PA 19007
7PM – 11PM
Featuring a silent auction, live music, purple kombucha and craft beer from Naked Brewing Company! Proceeds benefit the EFEPA!
Strike Out Epilepsy Bowl-a-thon!
Chacko’s Family Bowling
195 Wilkes-Barre Blvd. Wilkes-Barre, PA
3:00PM – 5:PM
$15 to Enter to cover bowling, shoes and snacks
RSVP to Mary Loughlin at firstname.lastname@example.org or call 570-592-1150
Epilepsy Awareness Eagles Tailgate
Lincoln Financial Stadium Lot P
1PM – 4:30PM
Join the EFEPA for our Epilepsy Awareness Tailgate to celebrate our Epilepsy Warriors. Bring a dish to share and come cheer on the Eagle against the New England Patriots. Go Birds! Contact email@example.com to tell us know what potluck dish you plan on bringing. The EFEPA will be recognized as the Community Red Zone Partner during the game.
Young Friends trip to Jim Thorpe
11AM – 4PM
Join the EFEPA and our Young Friends as we enjoy historic downtown Jim Thorpe’s shops, restaurants and pubs. We’ll also be taking a scenic train ride through the breathtaking Lehigh Gorge – a must see for any Fall lover!
$15 for train ticket and lunch
RSVP required! Contact Rena Loughlin at firstname.lastname@example.org
Lehigh Valley “Strike Out Epilepsy” Bowling Party
Haja Rose Bowl
801 N. 15th Street Allentown, PA
$10 to enter covering bowling, shoes, snacks & pizza!
Join your fellow Long Valley friends for an afternoon of bowling, fun and food! Just $10 to Enter! (Covers shoes, snacks & pizza) RSVP eequired! Contact: Ellen Baca at 610-737-0613 LV@efepa.org
Dine & Donate Nights
Dine & Donate at Panera Bread
1022 Baltimore Pike, Springfield, PA 19064
Bring THIS flyer or show an electronic version to the cashier when you place your order and they’ll donate a portion of the proceeds from your purchase. Ordering Online for Rapid Pick-Up or Delivery? Enter “PRFUND” as your Promo Code to have a portion of your proceeds donated to the EFEPA.
Dine & Donate at Iron Hill Brewery & Restaurant
130 E Bridge St, Phoenixville, PA 19460
Iron Hill Brewery and Restaurant in Phoenxville, PA will donate 20% of your food bill (excluding alcohol, gratuity & taxes) ALL DAY to the EFEPA!
Dine & Donate at Isaac’s
245 Centerville Rd, Lancaster, PA 17603
Isaac’s donates 25% of your food and beverage purchase with THIS flyer. They also give 15% of gift cards sold to be used on a future visit. Coupons and discounts cannot be used during the fundraiser.
Dine & Donate at Iron Hill Brewery & Restaurant
1150 Market St, Philadelphia, PA 19107
Iron Hill Brewery and Restaurant in Philadelphia, PA will donate 20% of your food bill (excluding alcohol, gratuity & taxes) ALL DAY!
November 7th, 8th & 9th
Dine & Donate at Grub Burger Bar
254 Montgomery Mall, North Wales, PA 19454
Grub Gives Back! Grub Burger Montgomeryville will donate a portion of the total sales from the day. Just show the cashier THIS flyer.
Dine & Donate at PJ Whelihan’s
3395 High Point Blvd, Bethlehem, PA 18017
3PM – 9PM
Print out THIS flyer or present it on your phone in and 15% of your bill will be donated, excluding alcohol, to the EFEPA for National Epilepsy Awareness Month!
Dine & Donate at PJ Whelihan’s
12 General Warren Blvd, Malvern, PA 19355
3PM – 9PM
Print out THIS flyer or present it on your phone in and 15% of your bill will be donated.
Dine & Donate at Pour House
124 N Haddon Ave, Westmont, NJ 08108
5PM – 9PM
Print out the flyer or present it on your phone in and 15% of your bill will be donated, excluding alcohol.
Dine & Donate at Iron Hill Brewery & Restaurant
781 Harrisburg Pike, Lancaster, PA 17603
Dine & Donate all day at Iron Hill Brewery and Restaurant in Lancaster, PA! They will donate 20% of your food bill (excluding alcohol, gratuity & taxes) to the EFEPA!
Dine & Donate at Copperhead Grille
1731 Airport Rd, Allentown, PA 18109
5PM – 9PM
Present THIS flyer, either printed or electronically, when you dine or take out and 15% of your food and beverage will be donated to the EFEPA!
Looking for a way to make a difference, take action and get involved with the EFEPA? Hosting a DIY fundraiser is the perfect opportunity to educate people in your direct community about epilepsy and seizure disorders while raising critical funds and awareness!
Step 1: Get in Touch
All ‘Host Your Own’ fundraiser events that benefit the EFEPA MUST be registered.
Please complete the Event Application Form, sign our Terms and Conditions Form and return by email: email@example.com, fax: 215-629-4997, or mail: Epilepsy Foundation Eastern PA, 919 Walnut St, Suite 700, Philadelphia, PA 19107, Attn: Development.
We ask that you please do not move forward with your plans until you have submitted your application and have been contacted by our Development Team. If approved, don’t forget to send us a summary of your event’s success and include any photos that you took!
All checks should be made payable to “Epilepsy Foundation Eastern PA or EFEPA”
All proceeds should be sent to:
Epilepsy Foundation Eastern PA
919 Walnut Street, Suite 700
Philadelphia, PA 19107
Step Two: Get Started
We know fundraising can seem like a daunting task – but don’t worry! A good place to start is by determining the goal of your event (but be practical with your goals!) Ask yourself: How much do I want to raise? How many people do I think will attend? How will I go about inviting/recruiting people to attend?
Next, set a date, time and location for the event with a corresponding schedule. The best events take time to plan, so start early! Recruit an appropriate number of volunteers to help you execute the event smoothly. Don’t hesitate to contact us with questions, or if we can provide any helpful materials.
One great way to increase your efforts is by planning a creative fundraiser event based around your interests. You name it, people have turned their hobbies into creative events to benefit the EFEPA and our local epilepsy community.
Here’s some ideas of events your fellow all-star Epilepsy Champions have hosted in the past:
- Host a donation based yoga class, spin class, barre class, or whatever type of fitness class you’re into!
- Organize a donation based bowling night at your local bowling alley.
- Host a wine & cheese night at your home! Ask your friends to bring $10 to donate.
- Organize a “Jeans Day” at your workplace. For anyone who donates $5, they’ll be allowed to wear jeans to work that Friday.
- Organize a week-long change collection at your kids’ school. That pocket change adds up quickly!
- Host a Paint Night party. Work with one of the local organizers to invite your friends out for some wine and painting with a percentage of the class fee going to your fundraising page.
- Who doesn’t love board games? Invite your loved ones over to play games and charge an “Entrance” fee.
Step Three: Get the Word Out
To make your event as successful as possible, we recommend spending a considerable amount of time on promotion. Post on your social media networks, print out flyers and posters to distribute locally, send out targeted one-on-one emails to family and friends or advertise the event on public websites.
And, don’t forget to talk about your event (and epilepsy!) as much as possible to take advantage of Word-of-Mouth advertising!
Meanwhile, do outreach for sponsorships. Consider sponsors that make sense for your event. Start with businesses that you frequent or might have a natural interest in your event. Focus on local businesses instead of large corporations who are often difficult to reach and involve. Consider your needs and expenses while contacting potential sponsors; many items can be donated by local businesses that would like to help with your cause.
If you have a personal story and connection to epilepsy that you feel comfortable sharing with your community, we strongly encourage you to do so! Not only will you be spreading awareness, you will also be helping your network understand epilepsy and increase the chances of receiving their support.
Need inspiration? Check out other Epilepsy Champions who have shared their story!
A personal letter to your local newspaper editor is another great way to gain media exposure for National Epilepsy Awareness Month! If you’re stuck on ideas, use our simple template HERE to get started.
Join us as we turn Facebook, Twitter and Instagram PURPLE for Epilepsy Awareness Month! All month long, the EFEPA will be posting facts, statistics and pictures to educate the public and spread epilepsy awareness. Help us create an active dialogue and online community while reaching new audiences by sharing, liking and commenting on our daily posts. Through social media, new individuals and families in your network can learn about epilepsy, as well as the EFEPA’s community events, programs and resources.
Personally posting about epilepsy on social media is a great way to spread awareness and raise funds for epilepsy! Craft your own messages on social media to let your friends know why November and epilepsy awareness are important to you. Follow our social media tips below for the most effective awareness posts:
- Keep it short and punchy. The most effective posts are factual and to the point.
- Tying facts and statistics to your posts can be a powerful tool. Use the examples below on social media (Facebook is still our favorite, but Instagram, LinkedIn, and Twitter are great, too), via email, in person or on the phone!
- Strengthen your posts with visual aids. Check out our social-media-ready graphics below to help catch your network’s eye. Use these images in conjunction with the provided sample content for super effective posts!
$26 for the 1 in 26
1 in 26 people will be diagnosed with epilepsy in their lifetime. Everyone knows someone affected by seizure disorders. Did you know I am (or my child/parent/ sibling/loved one is) the 1 in 26? This #EpilepsyAwarenessMonth, I’m asking you to consider making a donation of $26 in recognition of those who are living with epilepsy and seizure disorders. (Insert link to personal fundraising page)
10 Friends for 1 in 10
1 in 10 people will have a seizure at some point in their life. For #EpilepsyAwarenessMonth I’m sharing tips on how to be #SeizureSmart with 10 of my friends. Will you do the same? Check out www.efepa.org/November for more tips and ways to get involved. (Tag 10 friends)
3.4 million people in the US and over 110,000 residents of Eastern PA are living with epilepsy. I’m (or my child/parent/sibling/loved one is) one of them.
This #EpilepsyAwarenessMonth, I’m talking about it to work towards ending it.
Visit www.efepa.org/November to learn more and help spread awareness this November.
$33 for the 33%
33% or 1/3 of people diagnosed with epilepsy are living with uncontrolled seizures because no medication or surgery will work for them.
This #EpilepsyAwarenessMonth, I am honoring the 33%. Please visit www.efepa.org/November to learn more and consider donating $33 to help provide programs, resources, services and HOPE for the 33%.
Did You Know…that epilepsy is the fourth most common neurological disease after migraine, stroke, and Alzheimer’s disease? Everyone knows someone living with epilepsy, yet the disorder is underfunded in research initiatives and rarely talked about. This #EpilepsyAwarenessMonth, join me in shining a light on epilepsy by raising awareness. Visit www.efepa.org/November to learn more.
470 for the 470,000
470,000 children under in the US are living with epilepsy and seizure disorders. This November, I’m trying to raise $470 for #EpilepsyAwarenessMonth in recognition of the hundreds of thousands of kids living with seizures. Will you help me reach that goal? No donation is too small – every little bit counts and gets me one step closer! (Insert link to personal fundraising page)
$70 for the 70%
Anyone can have epilepsy at any point in their lifetime. In 60-70% of the cases, the cause of epilepsy is unknown. I’m asking seven of my friends to donate $10 to raise $70 by the end of today so that someday we might know more about what causes this disorder and how we can stop it. #EpilepsyAwarenessMonth (Tag 6 friends) (Insert link to personal fundraising page)
Epilepsy is a brain disorder that causes seizures. Seizures are abnormal activity in the brain. 1 in 10 people will have a seizure in their lifetime, and 1 in 26 people will be diagnosed with epilepsy in their lifetime. Not everyone who has a seizure will be diagnosed with epilepsy, but everyone diagnosed with epilepsy has seizures. #EpilepsyAwarenessMonth
Below are additional Epilepsy Awareness Month graphics that look particularly great as your Facebook banner image!
Facebook now has a feature to create fundraisers which enables our supporters to raise money for the EFEPA directly on Facebook. You can set up a dedicated fundraiser page to share your personal story, tell others about the EFEPA’s mission and rally around a fundraising goal.
Updating your email signature to include information about Epilepsy Awareness Month is a simple and easy way to educate and connect with everyone you contact. Below are several examples to use:
- I support Epilepsy Awareness Month because someone I love is battling epilepsy. Learn the facts about epilepsy at www.efepa.org/November
- Did you know that November is Epilepsy Awareness Month? 3.4 million Americans live with epilepsy. Learn more at www.efepa.org/November
- 1 in 26 will be diagnosed with Epilepsy in their lifetime. November is Epilepsy Awareness Month. Join me in spreading the word. Learn more at www.efepa.org/November