Events in the Epilepsy Community June 2019

10 June 2019, SeizureLink Staff
We pored over more than a hundred calendars for various epilepsy organizations and bring you some of the best event offerings this month.

Summer is finally here, and the epilepsy community is abuzz with golf tournaments, conferences, galas, and more. The month of June is a busy time for many of our epilepsy organization friends and they would love to include you in the festivities. We pored over more than a hundred calendars for various epilepsy organizations and bring you some of the best event offerings this month. Your participation means so much to families who struggle with epilepsy, so please consider getting in on some of the fun and help support epilepsy research.

These are the June events for the epilepsy community. If your organization has an event, of if you know of an event not featured here, please let us know so we can include it. Send an email with all the information, including the URL and contact info to SLMarketing@brainsentinel.com. Please try to give us at least one-month notice, if possible. This will ensure that we can get it on our calendar as early as possible, giving our readers a little time to plan.

Event: Project ECHO for Epilepsy and Neurology, Epilepsy Foundation
When: Thursday, June 6 at 12:00 pm until 1:00 pm EDT
Where: University of Cincinnati, Cincinnati, Ohio
Description: Primary Care Approach to Stroke Diagnosis & Treatment presented by Dr. Elisheva Coleman. To improve patients’ care in their communities, we are making sure front line providers can connect with specialists for advice, best practices, and training. Held on the first Thursday from January to June 2019, ECHO® Epilepsy/Neurology sessions are aimed at primary care providers including physicians, physician assistants, and nurse practitioners, but anyone who cares for adults with epilepsy and neurological conditions may attend. Each session will begin with the presentation of a challenging case, followed by consultation on how to handle the case, a brief overview of the topic, and a lively Q&A with participants.

Event: Basics of Seizures and Epilepsy – AANN Webinar Series, Epilepsy Foundation
When: Thursday, June 6 from 12:00 pm until 1:00 pm EDT
Where: Online: Register Here
Description: Many people do not know what to do when a person has a seizure. This can lead to adverse outcomes and/or inappropriate treatment. Patient referrals to neurology and epilepsy care are sporadic, and knowledge gaps exist among most health care professionals about when, where and how to refer. Although published quality indicators exist, key aspects of quality care in epilepsy are not implemented consistently. A better understanding of seizures and epilepsy will allow nurses to educate patients/families with epilepsy on the importance of care by a neurologist.

Event: Webinar: What does epilepsy have to do with Autism?, Family Resource Network
When:
Thursday, June 6 from 12:00 pm until 1:00 pm EDT
Where: Online: Register Here
Description: Epilepsy can occur in up to 40% of individuals with Autism, and even more have abnormal electroencephalograms (EEG). With this compelling connection, parents and caregivers might be curious to know if their child with Autism has Epilepsy and what to do about it. Epilepsy can complicate the care and management of individuals with Autism, but also provides insight into the biological causes and contributions to Autism and associated problem behaviors. This Webinar will examine the relationship between Autism and Epilepsy, including its signs and symptoms, the importance of early detection, how Epilepsy can provide insight into the manifestations of Autism, treatment options, and outcomes. This presentation will provide important information for parents, caregivers and professionals working with children and adults with Autism.

Event: Arkansas School Nurses Association Summer Conference, Epilepsy Alliance Louisiana
When: Monday, June 10 through Tuesday, June 11
Where: Benton Event Center, Benton, Arkansas
Description: Our Executive Director, Julie Martin, will be presenting at the annual ASNA Summer Conference in Benton, AR.

Event: RettEd: Nutrition, RettSyndrome.org
When: Tuesday, June 11 from 1:00 pm until 2:30 pm EDT
Where: Online: Register Here
Description: Please join us as we explore optimal nutrition strategies in Rett syndrome across the age spectrum. This live webcast will be especially helpful to caregivers, care providers, nutritionists and gastroenterologists. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with current, correct and helpful information in the here and now. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Speaker: Suzanne Geerts, MS, RD, LD UAB

Event: Facebook Live: Summer Fun and Epilepsy Camps, Epilepsy Foundation
When: Wednesday, June 12 at 8:00 pm EDT
Where: Online: @EpilepsyFoundationofAmerica
Description: Join us on Facebook to learn about and prepare for epilepsy camps, traveling, and summer fun. We’ll have tips for families living with epilepsy. Host: Patty Osborne Shafer RN, MN, Senior Director, Epilepsy Foundation
Guest: Nikki Baker MNM, Program Director, Epilepsy Foundation Minnesota

Event: EPI Rec/Rochester Epilepsy Network Summer Picnic, Epilepsy Alliance of America: New York
When: Thursday, June 13 from 6:00 pm until 8:00 pm EDT
Where: Hawthorne Shelter at Genesee Valley Park, Rochester, New York
Description: Join us as we celebrate the beginning of summer. Please bring a dish to pass. EPI will provide hamburgers and hot dogs. The next meetings for EPI Rec & Rochester Epilepsy Network will be in September! Enjoy your summer! RSVP to Mike Radell at (585) 442-4430 x2741 or mradell@epiny.org.

Event: Epilepsy and Dietary Therapies: How What You Eat May Help Control Seizures, CURE
When: Thursday, June 13 from 1:00 pm until 2:00 pm CST
Where: Online: Register Here
Description: For individuals with epilepsy – particularly refractory epilepsy – change of diet can be a recommended therapy for seizure control. While the ketogenic diet has been around for almost a century and is the arguably the most well known dietary treatment option, today, there are multiple diets used to treat specific epilepsy types and syndromes. In this webinar, two neurologists will come together to present both the research and clinical perspectives of dietary therapies. Dr. Jong Rho will speak to the science backing the use of dietary therapies to control seizures, and Dr. Eric Kosoff will discuss how doctors determine which patients to recommend these therapies for, as well as how patients can work with their doctors to navigate these options. A live Q & A will follow the webinar.

Event: Double Down Beantown: Boston Bets Against Dravet, Dravet Syndrome Foundation
When: Friday, June 14 from 6:30 pm until 11:00 pm EDT
Where: MIT Endicott House, Dedham, Massachusetts
Description: Join us for an evening of fun and giving. We’ll have food, drinks, silent auction, and casino games. Attire is cocktail/business casual.

Event: Siera’s Scramble Golf Tournament, RettSyndrome.org
When: Saturday, June 15 at 8:00 am EDT
Where: Maple Creek Golf Club, Shepherd, Michigan
Description: Event includes 18 holes of golf with cart, hot dogs at the turn, lunch on the patio after, event shirt for each golfer, on course events, raffle items, and drinks available to purchase.

Event: Charmed by Charity, RettSyndrome.org
When: Saturday, June 15 from 2:00 pm until 4:00 pm CDT
Where: ALEX AND ANI St. Louis Galleria, St. Louis, Missouri
Description: Shop to give back. 15% of all ALEX AND ANI sales will be donated to RettSyndrome.org

Event: Online Chat: Summer Camps, Epilepsy Foundation
When: Thursday, June 20 from 8:00 pm to 9:00 pm EDT
Where: Online: See “To Attend”
Description: Please join us for an online, text-based chat about Summer Camps! Hosted by the Wellness Institute with special guest chatter: Sandra Cushner Weinstein PT, LICSW, LCSW-C
Director of Services, Department of Neurology
Director of Brainy Camps, Children's National Health System
Assistant Professor of Pediatrics and Neurology
George Washington University School of Medicine

Event: 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC, Tuberous Sclerosis Alliance
When: Thursday, June 20 – Saturday, June 22
Where: Chelsea Hotel Toronto, Toronto, Ontario
Description: The 2019 conference will be presented by the TS Alliance in partnership with Tuberous Sclerosis Canada Sclérose Tubéreuse and the TS Alliance of Mexico. More information will be posted on this page in the coming months. Keynote Speaker: David Neal Franz, MD, Conference Agenda

Event: Goin’ for Owen! 5K for Dravet, Dravet Syndrome Foundation
When: Friday, June 21 from 4:30 pm until 7:30 pm MDT
Where: Ann Morrison Park, Old Timer’s Shelter, Boise, Idaho
Description: This 5K family-fun run/walk is in honor of Owen Watson and includes a raffle and a silent auction. Children with Dravet Syndrome / Epilepsy are FREE and will get a “Super Hero” cape!

Event: STXBP1 Investigator and Family Meeting, CURE
When: Friday, June 21 and Saturday, June 22
Where: Sheraton University City, Philadelphia, Pennsylvania or Live Stream
Description: Friday, June 21 will be dedicated to Investigators ONLY and will be held at Children’s Hospital of Philadelphia. This is where Investigators will have the opportunity to present STXBP1 research and interact with other scientists studying the gene. Investigators will have a chance to interact with our families during the banquet and poster session that night. On Saturday, June 22, our sessions will be held at the Sheraton University Center and here is where parents, family, and other caregivers will have an opportunity to learn about research that is built and presented for the non-scientific community. Your participation at the SIFM is invaluable to the STXBP1 Foundation as discussions and information gleaned will assist the Foundation and the Scientific Advisory Board to build a scientific roadmap. This output will inform future decisions and drive future investments by the STXBP1 Foundation. Through this interaction we hope to drive research in a manner that has the greatest potential to provide better therapies and ultimately, a cure. It is our belief that the relationships formed between families and researchers will improve the quality of research and ultimately, a cure!

Event: 9th Annual Golf Tournament for Epilepsy, Epilepsy Foundation of Vermont
When: Monday, June 24 at 11:30 am EDT
Where: Vermont National Country Club, Burlington, Vermont
Description: Win a new Volvo in the Hole in One Contest sponsored by Almartin Volvo and NFP. Lunch and barbecue dinner included with entry. We’ll have great prizes, 50/50 raffle and silent auction.

Event: Broadway Sings for CURE, CURE
When: Monday, June 24 at 6 pm EDT
Where: The Irene Diamond Stage, Pershing Square Signature Theater, New York, New York
Description: Join us for Broadway Sings for CURE, an evening of dazzling performances by Broadway stars. This event will be hosted by Miguel Cervantes, star of Chicago’s Hamilton. Miguel understands all too well how devastating epilepsy can be, as his daughter, Adelaide, was diagnosed with a severe form of epilepsy called infantile spasms at seven months old. She continues to battle this condition every day. An incredible line-up of Broadway stars will perform live, putting epilepsy center stage to raise funds for critically needed research. 

Event: Webinar: A Focus on Health for Women and Girls with Epilepsy, Epilepsy Foundation
When: Wednesday, June 26 from 8 pm until 9 pm EDT
Where: Online: Register Here
Description: Dr. Elaine Kiriakopoulos and her guest will talk about hormonal changes that can impact epilepsy; talking with your doctor about contraception and family planning; considerations before, during and after pregnancy and for breast feeding; and other issues like bone health and general health (nutrition, exercise).

Event: Rip it for Rett, RettSyndrome.org
When: Friday, June 28
Where: Dunegrass Country Club, Scarborough, Maine
Description: The Rip if for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.

These are the June events for the epilepsy community. If your organization has an event, of if you know of an event not featured here, please let us know so we can include it. Send an email with all the information, including the URL and contact info to SLMarketing@brainsentinel.com. Please try to give us at least one-month notice, if possible. This will ensure that we can get it on our calendar as early as possible, giving our readers a little time to plan.

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