What's Happening in the Epilepsy Community in May 2019

25 April 2019, SeizureLink Staff
"You’ll find that the May calendar is full of family fun activities like strollathons, fun runs, and 5K runs as well as golf tournaments and plenty of educational opportunities. We scoured the calendars of dozens of epilepsy organizations to bring you events that will let you support epilepsy research while having some great family fun."

Now that winter has slipped away and spring is really starting to bloom, the epilepsy community is bustling with activity.

You’ll find that the May calendar is full of family fun activities like strollathons, fun runs, and 5K runs as well as golf tournaments and plenty of educational opportunities. We scoured the calendars of dozens of epilepsy organizations to bring you events that will let you support epilepsy research while having some great family fun.

Here are the May events for epilepsy. If you know if an event or your organization has an event coming up and you would like to include it on our monthly calendar, send us an email at SLMarketing@brainsentinel.com. Please try to let us know a month in advance if possible, to ensure that we can get it in on time and our readers have time to plan.

Event: Donate $10 for a Chance to Win an Overnight Stay, Chelsea’s Wish
May 1 – 14 (to enter) and drawing on May 15
Where: Online
Description: Have you ever wanted to stay and play at The Great Wolf Lodge in Colorado Springs, Colorado? Here is a change to win an overnight stay, along with a $200 gift card to be used for food, etc. For each $10 donated through this site you will be entered into the drawing. Donate anytime between now and midnight May 14, 2019. The drawing will take place on May 15, 2019 to kick of our Chelsea's Wish 2019 season. Chelsea's Wish project grants families with loved ones dealing with epilepsy to all major expense paid trips to Epilepsy Awareness Day and Educational Expo at Disneyland each year. The overnight stay voucher expires April 20, 2020.

Event: Online Career Fair for People with Disabilities Hosted by Getting Hired, National Epilepsy Foundation
Thursday, May 2 from 12 pm to 3 pm
Where: Online
Description: Getting Hired is hosting an online career fair for job seekers with disabilities. Connect directly with employers to talk about career opportunities for all industries and experience levels. The live chat (text based) event is a fully accessible from any internet-connected device.

Event: Miracle for Molly, Reverse Rett

When: Thursday, May 2 from 6:30 pm until 11 pm
Where: The Merion, Cinnaminson, New Jersey
Description: Please join us for the 4th Annual Miracle for Molly at the Merion. This year’s event is more important than ever for Molly and for the 350,000 other brave children and adults with Rett Syndrome. The Rett Syndrome Research Trust is going full force in carrying out its bold, $33 million strategic plan, Roadmap to a Cure. Over $17 million has been contributed to date, so RSRT has a great start. But we need Miracle for Molly 2019 to have its biggest impact yet. Every sponsorship, donation, ticket purchase, and auction item matter and gets us closer to making Rett the first neurological disorder that can be cured. This is a cause where you are truly making a difference to so many lives. Thank you from the bottom of our hearts and we can’t wait to see you on May 2nd, 2019!

Event: Project ECHO for Epilepsy and Neurology - May, National Epilepsy Foundation
Thursday, May 2 from 12 pm to 1 pm ET
Where: Online
Description: Primary Care Approach to Treatment of Acute & Chronic Low Back Pain presented by Dr. Lester Duplechan.

Event: City Bash Benefiting the Dravet Foundation, Dravet Syndrome Foundation
Thursday, May 2 from 6:30 pm until 11 pm
Where: Gramercy Farmer and The Fish, New York, New York
Description: Food, cocktails, silent auction, and more fun activities, including a VIP reception with private tastings of spirits, champagne, and small bites.

Event: Walk the Talk for Epilepsy – Pensacola, Epilepsy Florida
When: Saturday, May 4 starting at 8 am 

Where: Seville Square, Pensacola, Florida
Description: DJ, Star Wars characters, Clayton Feig Youth Award, Raffles and Prizes.

Event: 3rd Annual Cure Rett Iowa Strollathon & Auction: Warehouse Edition!, RettSyndrome.org
Saturday, May 4 from 11 am till 2 pm
Where: Kinzler Construction, Ankeny, Iowa
Description: Join us, rain or shine, for the 3rd Annual Cure Rett Iowa Strollathon & Auction: Warehouse Edition! Enjoy a fun filled scavenger hunt, a chance to meet with other local Rett families, a raffle, auction & children’s activities

Event: 12th Annual St. Louis Strollathon, RettSyndrome.org
Saturday, May 4 starting at 9 am
Where: JCC St. Louis, St. Louis, Missouri
Description: Be sure to join us on Saturday, May 4th for the 12th Annual St. Louis Strollathon to support research for a cure. You’ll get the chance to meet with other local Rett Syndrome families and there will be a raffle, visit with Fredbird, and Silly Jilly the balloon artist.

Event: 2019 Golf Outing, Epilepsy Florida
Saturday, May 4
Where: Spanish Wells Golf and Country Club, Bonita Springs, Florida
Description: Join us for the inaugural Epilepsy Florida Golf Outing. We will have a great day of gold and all proceeds will benefit individuals living with epilepsy. This event is essential to furthering the mission of Epilepsy Florida in the Naples area. The day will feature golf, breakfast, pre-event, and on-course contests, player gifts, team prizes, and a deluxe Awards Luncheon following golf.

Event: Live Rett Free 2019: 5K Run, 1 Mile Fun Run &1 Mile Walk or Stroll, RettSydrome.org
Sunday, May 5 starting at 1 pm
Where: EA Powell Elementary School, North Baltimore, Ohio
Description: 5K run, fun run and 1 mile walk or stroll to support Rett Syndrome research and find a cure.

Event: Michigan Strollathon, RettSyndrome.org
Sunday May 5 starting at 10 am
Where: Drake Sport Park, West Bloomfield Township, Michigan
Description: Join us for the Michigan Strollathon. Enjoy a scenic stroll and get the chance to meet with other local families.

Event: 2019 Epilepsy “Have A Heart” Golf Tournament, Epilepsy Foundation: Central and South Texas
Saturday, May 6 from 8 am to 3 pm
Where: TPC San Antonio Golf Resort, San Antonio, Texas
Description: Your support of the 2019 Epilepsy “Have A Heart” Golf Tournament will go towards programs that will directly help those with epilepsy and raise awareness and understanding of epilepsy in our society.

Event: 3rd Annual Purple for Penny Open Bar Fundraiser, Dravet Syndrome Foundation
Friday, May 10 from 7 pm to 9 pm
Where: Raise New York, New York, New York
Description: Join us for the 3rd Annual Purple for Penny Open Bar Fundraiser as we raise money and awareness for Purple for Penny and the Dravet Syndrome Foundation! In addition to the 2 hour open bar, there will be a specialty cocktail and food specials with proceeds from all going directly to Purple for Penny (benefiting the to help fund research and support for affected families). We’ll also have a silent auction like last year so get ready for some awesome swag!

Event: Third Annual MN Sound Bites,  Tuberous Sclerosis Alliance
Friday, May 10 from 6 pm to 10 pm
Where: The Metropolitan
Description: Please join us as we celebrate the Tuberous Sclerosis Alliance's 45th Anniversary at Minnesota Sound Bites, for an Evening of Food, Wine and Music at The Metropolitan Ballroom & Clubroom. Food during the one-hour reception will showcase a sampling of the best restaurants around Minneapolis who donate their food and service to provide our guests with a unique dining experience. Music begins during food and wine featuring DJ Jake Rudh and culminates in an intimate acoustic concert featuring Chris Hawkey and Kat Perkinswho will be joined by other incredible local performers to entertain you through the balance of the night. Beer & Wine provided with a silent auction, followed by a short program, live auction. Hosted by Melissa Peterman, a Minnesota-raised actress and comedienne.

Event: Totem to Totem Half Marathon, Dravet Syndrome Foundation
Saturday, May 11
Where: Rotary Beach, Ketchikan, Alaska
Description: Register for the race and then register to run for our kids!
Team members agree to raise a minimum of $300 for DSF and we will mail you your race shirt. You train for the race and raise money for the. We provide the resources you need to cross the finish line. You’ll raise awareness and critical funding that will help change the lives of those with Dravet Syndrome, while making an impact on your life and health as well.
Race for Research!

Event: Tennessee Strollathon, RettSydrome.org
Saturday, May 11 starting at 10 am
Where: Athens Park, Athens, Tennessee
Description: 2nd Annual Tennessee Strollathon for Rett Syndrome will be held at Athens Regional Park in Athens, TN. Please come and enjoy being with other Rett families while raising money for a cure.

Event: 7th Annual Charamella Golf Tournament, RettSyndrome.org
Monday May 13 starting at 11 am
Where: Westover Country Club, Norristown, Pennsylvania
Description: Join us for Lunch, 18 Holes of Golf, Driving Range, Tournament T-shirt, Dinner, Prizes, Raffle Table, Silent Auction

Event: 10th Annual Ella Foard Foundation for Rett Syndrome Charity Golf Classic, RettSyndrome.org
Monday May 13
Where: Providence Country Club, Charlotte, North Carolina
Description: Join us for 18 Holes of Captain’s Choice Golf, Coffee & Pastries upon arrival, Lunch and Awards Dinner, Raffle & Goody Bag, Skill (Luck?) Contests, Silent Auction

Event: The Great Rett Shootout, RettSydrome.org
Friday May 17 at 9 am
Where: Blackwood Gun Club, TX,
Description: Shooting competition to support Rett Syndrome research.

Event: Outlook 2019, Tuberous Sclerosis Association
Saturday, May 18
Where: Mercure Bristol Holland House Hotel., Bristol
Description: The TSA is delighted to confirm that Outlook 2019 will take place on Saturday 18 May in Bristol, at the Pinterest-EpilepsyCommunityMAY Mercure Bristol Holland House Hotel.Outlook is a free event for adults living with TSC, offering the opportunity to make new friends (and meet with old ones), share experiences about TSC and attend fun and interesting workshops on a range of topics.

Event: 10th Annual Walk for Epilepsy, Epilepsy Foundation - Vermont
Saturday, May 19 at 10:30 am
Where: Oakledge Park, Burlington, VT
Description: Join us for music, kids’ activities, face painting and BBQ. Music provided by J.A.M. Entertainment

Event: 14th Annual Samantha Corpus Golf Tournament, RettSyndrome.org
Tuesday May 21
Where: Blackhawk Country Club, Danville, California
Description: Golf tournament to support Rett Syndrome Research.

Event: Antiepileptic Drug Trials XV Conference, National Epilepsy Foundation
Wednesday May 22 through Friday May 24
Where: JW Marriott Miami Turnberry (Formerly Turnberry Isle Miami Hotel), Aventura (North Miami Beach), Florida
Description: Sponsored by The Epilepsy Study Consortium, University of Pennsylvania, and Epilepsy Foundation, the conference focuses on issues surrounding AEDD development and includes the annual Shark Tank Competition.

Event: Reverse Rett Chicago, Reverse Rett
Thursday, May 23 from 6 pm until 10 pm
Where: Galleria Marchetti, Chicago, Illinois
Description: With great optimism and gratitude, we invite you join us and support Reverse Rett Chicago 2019. We are proud to say that this gala, now in its fifth year, has become a premiere benefit event in the Chicago metro area. Your tremendous generosity has resulted in nearly $1.2 million contributed to the Rett Syndrome Research Trust since the event was first held. What’s most exciting is the impact we’ve had on advancing research towards changing the lives of the 350,000 brave children and adults who struggle with this severe neurological disorder.Reverse Rett Chicago 2019 is critical to ensuring that RSRT can continue this momentum and reverse the devastating symptoms of Rett. We’re confident that RSRT can achieve this, but it needs our most generous support. Every sponsorship, donation, and ticket purchase go right to RSRT to help execute its $33 million strategic research plan, Roadmap to a Cure. Thank you from the bottom of our hearts.

Many of the epilepsy organization chapters host smaller local activities like support groups and lectures. We did not include those in this list of epilepsy events. If you are interested in these types of events, check the website of the local chapters of epilepsy organizations to learn more. You can also do internet searches and check the pages or epilepsy organizations on social media to see what activities they have coming up.

While our list of epilepsy events here is extensive, there may be some events that we missed. If you see that we did not list event and you think our readers would like to know about it, please let us know so we can add it. Send all event submissions to SLMarketing@brainsentinel.com to include them on our calendar.


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