EDUCATION ADVOCACY EMPOWERMENT Digital Epilepsy Awareness Newsletter Volume 16 Issue 4 April 2021 Edition From the Executive Director’s Desk A Message from Jeannine Garab [email protected] 518.456.7501 - Ext: 106 April 1, 2021 Dear Friends, As we begin April, we are very excited for our 33rd Annual Confections in Chocolate, a Virtual Brunch for Hope. This event will be held on Sunday, April 18th at 11:00 a.m. Confections in Chocolate will look a little different this year compared to our previous galas. Let’s face it, we are all used to thinking differently these days! This year’s event is all about “Chocolate Re-imagined”, as we were not about to let COVID-19 take away CHOCOLATE-21! Truthfully, we are so thankful to be able to carry on the tradition of this long-standing signature event in our community! While much has changed over the past year, two things have not changed: First, we are still here for people with epilepsy, providing our programs and services to help those with epilepsy in our community. And second, we still need your support. Our programs, including counseling, support groups, art therapy, education, service coordination and our summer camp scholarships depend on the revenue raised at our Confections in Chocolate event. If you haven’t registered, there is still time. Please visit: https://bit.ly/ChocolateGala2021. Registration includes a brunch box filled with lots of goodies including chocolate truffles, Prosecco and hot chocolate. Our virtual event will include Benita Zahn of NewsChannel 13 as our Master of Ceremonies, along with our special celebrity guest, Greg Grunberg. Some of you may remember Greg from the NBC series Heroes. Others might remember him as Snap Wexley in Star Wars. Greg is also the parent of a child with epilepsy. Some other highlights of the event will include a chocolate pairing/tasting demonstration from our Chocolate Sponsor, Barkeater Chocolates, and the recognition of our Flame of Hope recipients – Greenwich Biosciences and Derrick Rumenapp. We will also introduce our 2021 Winning Kids – Giovanni LaBate and Sophia Olsiewski. I hope you will all consider joining us for this event. Our Committee has worked hard to bring this event to you in the most fun and special way possible! Sincerely, Jeannine S. Garab Executive Director Epilepsy Foundation of Northeastern New York Connect With Us! 3 Washington Square - Albany, NY 12205 Phone: 518.456.7501 l Fax: 518.452.1282 THANK YOU FOR YOUR SUPPORT AS WE CELEBRATE 40 YEARS OF PROVIDING PROGRAMS AND SERVICES IN NORTHEASTERN NEW YORK! We appreciate the support we have received from our donors and sponsors that have enabled us to provide programs and services to those affected by epilepsy and to the community since 1981. As we celebrate our 40th Anniversary in 2021, we would like to thank those donors and sponsors that have chosen to support us during this special year! Listed below are the donors and sponsors who signed on in March 2021. GOLD SPONSOR SILVER SPONSORS BRONZE SPONSORS SPECIAL FRIENDS Shelly Connolly in honor of our 2021 Winning Kid, Sophia Olsiewski John and Pam Eberle in honor of our 2021 Winning Kid, Sophia Olsiewski Faith Nielson To view the complete list of donors and sponsors that have chosen to support us during this special year, click here. If you would like to support our programs and services during this special year and be featured, please contact Susan at [email protected] or by calling 518.456.7501 - Ext. 114. Click here to make an online donation. - Page 2 - Information You Will Find In This Month’s Issue We made our newsletter easier to navigate. If you see an article that is of interest to you, simply click on that page number to navigate right to it! Page 2 - It’s our 40th Anniversary! Find out who joined the celebration in March and how you can help support our mission! Page 3 - News from our Board of Directors and Professional Advisory Board News from our Page 4 - Please Join Us! Board of Directors 33rd Annual Confections in Chocolate - A Virtual Brunch for Hope and Professional Advisory Page 5 - Mark Your Calendar for these April Webinars Board Live Webinar on Epilepsy & Employment Learn about Camp EAGR As we celebrate our The Ketogenic Diet for Medication-Resistant Epilepsy 40th Anniversary in 2021, we would like to thank the Page 6 - Community Educator’s Corner members of our Teens Speak Up! / Public Policy Institute Conference 2021 Board of Directors and Professional Advisory Board that have chosen to support us Page 7 - Epilepsy Education during this special year. 40 Districts for 40 Years Education Online SILVER SPONSORS A Note on COVID-19 Vaccine Eligibility Kevin Volk Page 8 - College Scholarship Opportunities BRONZE SPONSORS Have You Signed Your Child Up for Kids Crew Yet? The Beaudoin Family Page 9 - News You Can Use! Marjorie Bunch, MD Transportation Options Betty DiMaria Lindsay Ferraro, MD Page 10 - Calling all Adults with Active Seizures: Michelle Hebert Introducing Two Exciting New Programs Stephen Lansing PACES in Epilepsy: Program of Active Consumer Engagement Marie McCabe, PhD in Epilpesy Self-Management Catharine Potvin Project UPLIFT: Using Practice and Learning to Increase John Pugh, MD, PhD Favorable Thoughts Rusty and Sueann Senecal Page 11 - Find Your Support Gerald and Robyn Silverman TBI Support Group Marianna Spanaki-Varelas. MD, PhD Men’s and Women’s Support Groups Studio e Art Therapy Support Group SPECIAL FRIENDS Richard and Valerie Brooks Page 12 - Epilepsy Awareness Events and Jeffrey Burdick, MD Fundraiser Updates Andrew Hess, PhD 40th Anniversary Special Raffle Karen Wachs Purple Day®: Friday March 26, 2021 - Page 3 - Please Join Us! Our Mission The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. ctors EFNENY Board of Directors Jerilee Beaudoin, President Sunmark Credit Union 33rd Annual Confections in Chocolate Denise Sullivan, Vice President A Virtual Brunch for Hope Lynne Longtin, RN, DNP Secretary Sunday, April 18th 11am – Noon SUNY Polytechnic Institute Master of Ceremonies Kevin Volk, Benita Zahn, DPS Immediate Past President Retired - New York State Senate WNYT NewsChannel 13 Ashley Biggs Special Celebrity Guest Appearance LivaNova, PLC Greg Grunberg Matthew Dahl Parent/Actor/Advocate and Co-Founder, TalkAboutIt.org Pioneer Bank Registered guests will receive a link to the event and a Brunch Box Melissa D’Andrea to enjoy during the event, which includes a box of chocolate truffles Oracle provided by our Chocolate Sponsor, Barkeater Chocolates, Betty DiMaria maple syrup, jam, biscotti, and more! Wojeski & Company CPA’s PC Flame of Hope Awards Presented to Shelley Friel Greenwich Biosciences and Derrick Rumenapp Rockefeller College Recognition of our 2021 Winning Kids Michelle Hebert Giovanni LaBate and Sophia Olsiewski School Administrators Association of NYS Harriet Kang, MD Amazing Auction items will be available Mount Sinai School of Medicine to bid on at https://event.gives/efneny Stephen Lansing RSVP by April 9th New York State Technology Enterprise For more information and to register, visit H. Michael Okby Morgan Stanley https://bit.ly/ChocolateGala2021 Or call the office at 518.456.7501 Catharine Potvin Stragility, LLC Rusty Senecal Ellis Hospital Christopher Shelanskey National Grid Gerald Silverman Retired - Bloomberg BNA Karen Wachs Greenwich Biosciences Nicholas Zarrelli Proceeds from all of our events support our programs and services we continue to Saratoga National Bank & Trust Company provide during the pandemic. More information is available on our Facebook page and website, or contact Susan at [email protected] | 518.456.7501 - Ext: 114. - Page 4 - Mark Your Calendar for These April Webinars Live Webinar on Epilepsy & Employment! What Comes Next? Finding Your Career Path - Job Search Advice, Resources & Training for Various Stages of Your Work Life Date: Monday, April 5, 2021 1:00 - 2:15 PM Serving all people with Guest Speaker: Allison Nichol, Esq., epilepsy in the Capital Director of Legal Advocacy, Epilepsy Foundation Region, North Country Register in advance here: and Upper Hudson Valley https://zoom.us/webinar/register/WN_IUyxOQMcRB-IndJHXqfi4w Albany, Clinton, Columbia, Dutchess, Essex, Franklin, Fulton, Greene, Hamilton, Herkimer, Jefferson, Lewis, Montgomery, Rensselaer, St. Learn about Camp EAGR! Lawrence, Saratoga, Schenectady, Schoharie, Sullivan, Ulster, Warren, A Summer Camp for Kids with Epilepsy and Washington counties. Join us on Thursday, April 15th from noon - 1:00 PM to learn about Camp EAGR, a summer camp run by the Epilepsy Alliance of West/Central NY for kids between 8 and 17 years old living with epilepsy!* EFNENY Staff Darcy Below Camp Director, Michael Radell and Laurie Seltzer, DO of the University of Office Manager Rochester Department of Neurology will lead this session to provide more Mary Beth Champagne details about the camp and answer questions from parents and caregivers. Accounting & Human Resource Administrator Our Director of Community Education and Advocacy Coordinator, Erica, will be hosting this session, and will provide information about EFNENY’s Camp Erica DeNicola-Scher, MS Scholarship program and how to apply for funding. Director of Community Education & Advocacy Coordinator We hope you’ll join us! Jeannine Garab Register here: https://us02web.zoom.us/meeting/87080256864 Executive Director *Parents and guardians interested in learning about other camp-related programs/ Jenny Guerette, MSEd opportunities available for young adults over the age of 17 are encouraged to attend as well! Director of Medicaid Programs & Waiver Services Susan Kaczynski Director of Development Aaron Kent, MSEd The Ketogenic Diet for Medication-Resistant Epilepsy TBI Service Coordinator Join us on Thursday, April 29th from noon to 1:00 PM to learn about the Lori Kidd, BSW ketogenic diet and other dietary therapies for medication-resistant epilepsy Director of Information, Referral in adults and children.