EFVA’s Newsletters & Annual Reports

September 2024 Newsletter

Epilepsy Foundation of VA September 2024 Newsletter

SEPTEMBER 2024 NEWSLETTER

EPILEPSY FOUNDATION OF VIRGINIA

PROMOTE AWARENESS, PROVIDE ASSISTANCE
WWW.EPILEPSYVA.COM

DONATE TO KEEP OUR PROGRAMS GOING!

Don't forget to like our Facebook Page and
follow us on Twitter and X!

UPCOMING EVENTS

October is a busy month for EFVA. We hope to see you at some of our events!

We are very proud of our 9th annual Tour de Midnight, which will take place at the Midnight Brewery in Rockville, Virginia on Saturday, October 19, 2024!

From Rockville, participants can...

Bike 60 Miles to Lake Anna at 8.00 AM.
Bike 33 miles to Montpellier starting at 8.45 AM
Bike 17 miles to Rockville at 9.30 AM.

If you can't make it to Rockville, bikers, runners and hikers can ride, run and walk their own choice of distance at the satellite locations in Caboose Brewing in Vienna or the Frothy Moon in Williamsburg.

For more information, see the Tour de Midnight page on our website.

REGISTER NOW ON BIKEREG!

The Epilepsy Foundation of Virginia shall make use of these bike rides to promote our
USE A HELMET, PREVENT EPILEPSY campaign! See flyers below.

EFVA also looks forward to the Winchester Neurology/EFVA Run and Walk on Saturday, October 26, 2024!

REGISTER NOW!

SPECIAL SUPPORT GROUP WITH DR. ZIEMBA ON SEPTEMBER 25

EPILEPSY HERO ALICIA PEREZ

EFVA thanks Alicia Perez for the generous donation of one of her beautiful paintings for our Tour de Midnight event!

Alicia met with advisory board member Liya Tadesse to share her painting and the following:

"Alicia lived 90 years without any seizure issues, but one head trauma three years ago led to a brain bleed that brought on the seizures. She is thankful that the medication has curtailed the seizures. She is very thankful to Dr. Kurukumbi and the neurology team who have improved her quality of life and allowed her to be able to get back to her painting and the activities she loves.

Alicia gets out on walks daily and takes chair yoga at the public library."

Her favorite expression: “Go out there and MAKE it a great day.”

Thank you, Alicia!

VISIT TO VIRGINIA COMMONWEALTH UNIVERSITY (VCU) EPILEPSY DEPARTMENT

Dr. Christine Baca, Sandra Dewar and Suzanne Bischoff at VCU

Director of EFVA, Suzanne Bischoff, had a very interesting visit to VCU's epilepsy department, she was impressed by the Epilepsy Department’s procedures and the fabulous increase in volumes of epilepsy heroes helped every day.

In EMU Patient access, monitoring and nurses are in one unit: There is an alert when their monitors discovers a problem, which is also routed to the epilepsy floor. Plans are made for individual mental emergencies.
Every patient in EMU is flagged for possible surgery and there is thorough follow up. All the well known epilepsy surgeries are available at VCU.
EFVA, UVA and VCU have similar problems in our patient populations including: Limited to no support at home, memory problems, cultural perceptions of what epilepsy and epilepsy support is about.

There will be increased cooperation across universities. Suzanne will work with VCU on navigation and complex care patients.

Suzanne wishes to also thank Dr. Koch for the interesting and informative updates and all team members, including Joyceanne Anthony, for their hospitality.

Joey Diaz, Suzanne, and Mimi Mahone in the EMU (Epilepsy Monitoring Unit) at VCU

Thank you to INOVA for your support!

EPILEPSY RESEARCH: ALCOHOL AND YOU

DID YOU KNOW? Consuming alcohol is a common seizure trigger for people with epilepsy.

Consuming alcohol…
- may aggravate seizures in people with epilepsy
- may lead to increased seizure frequency
- may lead to increased risk of SUDEP
People with epilepsy that doesn’t respond well to antiseizure medications may be particularly affected
Alcohol usually doesn’t cause seizures while you’re drinking- it usually causes seizures once you stop
People who chronically consume large amounts of alcohol are more likely to have epilepsy than people who don’t

HOW DOES ALCOHOL AFFECT SEIZURES? Alcohol has the potential to contribute to the development of seizures in multiple ways, such as:

disrupting your sleep
interacting with your antiseizure medications
affecting your ability to remember or continue taking medications
contributing to dehydration (a common epilepsy trigger!)
causing changes to your blood sugar levels
directly changing brain activity
leading to alcohol withdrawal

Doctors often warn people who have epilepsy to avoid alcohol or to only drink in moderation. However, the CDC recommends that if you don’t currently drink alcohol, you should not start.

HOW DOES ALCOHOL AFFECT MEDICATIONS?

Alcohol and some antiseizure medications can have similar side effects, and taking them together can cause potentially dangerous complications. It’s especially dangerous to mix them when driving.
The leaflet that comes with your medications can advise you on whether it’s safe to mix your medication with alcohol.
Medications such as clonazepam and lorazepam are benzodiazepines that can cause a life threatening interaction when mixed with alcohol.

It’s important to always talk with your doctor about whether it’s safe to consume alcohol with your medication!

IF YOU DO DRINK:

Doctors suggest keeping to moderate or light alcohol consumption. Moderate alcohol consumption looks like:
- One drink or less per day for women
- Two drinks or less per day for men
- This article explores how alcohol affects people with epilepsy and provides recommendations for how much alcohol is best to consume.
According to the Epilepsy Society, consuming alcohol may make your epileptic medications less effective and may make the side effects of your medications worse.
Consuming alcohol in large quantities for extended periods seems to increase seizure frequency and might increase your risk of SUDEP.
The Epilepsy Foundation recommends:
- avoiding binge drinking
- avoiding abusing alcohol
- looking for help if you have an alcohol problem
- drinking alcohol in moderation if you do drink

Interested in more about alcohol and epilepsy?

This group of researchers surveyed 310 patients with epilepsy, finding…

204 people with epilepsy reported consuming alcohol in the last 12 months, and worsening seizures related to alcohol consumption were reported in 18.1% (37/204) of these people.
The amount of alcohol intake before alcohol-related seizures was at least 7 standard drinks, or the equivalent of 1.4 liters of beer or 700 milliliters of wine.
In almost all cases, seizures occurred within 12 hours of stopping alcohol consumption.
Generalized genetic epilepsy was associated with almost 6x increased risk of developing alcohol-related seizures.
Chronic heavy alcohol use was associated with an almost 9x increase.

These researchers looked at 8 different epilepsy and alcohol studies and found…

1.7x higher risk of epilepsy in people who consumed alcohol compared to non-drinkers
Epilepsy risk increases with increased alcohol consumption
57% of binge drinkers (heavy alcohol intake over one day) surveyed have diagnosed epilepsy

ALCOHOL MISUSE AND EPILEPSY:

The risk of SUDEP (sudden and unexpected death in epilepsy) is 2x higher in individuals with a history of alcohol dependence or substance misuse disorder. See more here.
Epilepsy patients are 5x more likely to die from alcohol-related causes than people without epilepsy. See more here.
Alcohol withdrawal syndrome (when people who are used to a lot of alcohol abruptly stop drinking) can cause minor symptoms like anxiety, headache, tremors, stomach discomfort, and insomnia, but can progress to severe symptoms including epileptic seizures.
- Because of the risk of seizures and other serious symptoms, detoxing from alcohol should only be attempted with medical support. Read more from Healthline here or a recent article here.

EFVA WELCOMES NEW PROFESSIONAL ADVISORY BOARD MEMBERS

Welcome to our two new advisory board members, Paul F. Koch, M.D. (Richmond, VA) and Liya Tadesse (Alexandria, VA). Thank you for serving our epilepsy heroes!

TEAM CHANGES IN CHARLOTTESVILLE

EFVA bids farewell to Christine Hollins, Program Director in the Charlottesville office, and thank her for all of her contributions to EFVA over the last six months! Christine ably managed the direct assistance program, helped with the 2024 scholarship selection process, donations, grants and sponsorships, and a variety of office operations and special projects. She furthermore staffed the epilepsy transition clinic at UVA and will continue to work with EFVA as a volunteer.

Christine’s last day is October 8. Best wishes, Christine, in your future endeavors!

EFVA is sad to see Christine leave, but is happy to welcome new students Shrinidhi Kittur and Harini Ganabady as program associates. They have already contributed greatly to helping epilepsy heroes and working on the USE A HELMET PRVENT EPILEPSY CAMPAIGN.

Pictures and contact information can be found on EFVA's Our Team page.

"USE A HELMET, PREVENT EPILEPSY" CAMPAIGN AROUND TOUR DE MIDNIGHT

During and around the Tour de Midnight on October 19th, the Epilepsy Foundation of Virginia shall distribute armbands and flyers encouraging the use of helmets, especially by young people ages 10-14.

Helmets can considerably prevent brain injury and epilepsy, so please convince your young family members, friends, and neighbors to wear them!

XELEVATE HOSTS FLYING FEST FUNDRAISER

The Epilepsy Foundation of Virginia is proud to be selected as a beneficiary of the Flying Fest Fundraiser, an outdoor event held in Leesburg, Virginia on November 2, 2024 sponsored by the Xelevate Flying Club.

We sat down with Alissa Biechlin, VP of Operations at Xelevate LLC to learn more.

EFVA: Tell us a little about the Xelevate Flying Club and the Flying Fest Fundraiser!

AB: The Xelevate Flying club is a non-profit recreational club whose members are a passionate community of aviation enthusiasts dedicated to promoting the love of flight and supporting worthy causes. We are thrilled to announce our upcoming Flying Fest Fundraiser, which will be held on 11/2/2024 from 10:00 am – 4:00 pm at Xelevate, Leesburg VA. This event is open to all. Along with flying RC airplanes and drones, there will be STEM activities for children, static displays including model rockets and a helicopter and organizations in attendance like the FAA, Blue Origin Club for the future, and EIT Avionics. This event will not only bring together members of the aviation community but also raise much-needed funds for two incredible organizations: the Epilepsy Foundation and the Donovan & Bank Foundation.

EFVA: Why did you select the Epilepsy Foundation of Virginia to be a beneficiary of the Flying Fest?

AB: We selected the Epilepsy Foundation of Virginia as one of the beneficiaries of this event because epilepsy directly affects our family, as several children in our family have epilepsy. We have seen firsthand how tools and resources have improved the quality of life for our own children, and we want to help others. Supporting the Foundation allows us to contribute to a cause that has a personal impact on our lives. The Epilepsy Foundation provides crucial resources, support, and research funding to help individuals and families like ours navigate the challenges of living with epilepsy. By choosing this organization, we hope to raise awareness, support ongoing research, and help improve the lives of those affected by epilepsy.

EFVA: How can people with epilepsy potentially benefit from technology and systems supported by Xelevate?

AB: People with epilepsy can potentially benefit from drone technology in several ways. One key application is in medical delivery services, where drones can quickly transport medications or emergency supplies to individuals experiencing a seizure, especially in remote or hard-to-reach areas. Drones equipped with monitoring devices can also be used to provide real-time health data, enabling quicker response times during a medical emergency. Furthermore, in search and rescue operations, drones can locate individuals who may have wandered or become disoriented during a seizure, enhancing their safety. By providing rapid response and support, drone technology can help improve the safety for those living with epilepsy. Recreational flying provides an opportunity for people with epilepsy to experience the joys of flight, something they may not be able to do as a licensed pilot.

EFVA: How can people learn more about Xelevate and the 2024 Flying Fest Fundraiser?

AB: Find more information and register online here !

Thank you, XELEVATE!

Register for Flying Fest Fundraiser

PAINT NIGHTS

Epilepsy heroes are invited to dive into the world of creativity with our virtual Paint Nights on Tuesdays from 6-7 pm! Participants use their own materials to create artworks and share them with others during this fun and engaging event.

Email Lauren Shirley, efva.lauren@gmail.com or efva.evans@gmail.com to request the Zoom link.

THANK YOU FOR YOUR SUPPORT!

Our epilepsy community is stronger each year because of YOU.

MAKE A DONATION

CALENDAR OF EVENTS

Register now for programs and events offered by the EFVA!

epilepsyva.com/calendar

EFVA Financial Documents:

990form

Audit

Annual Report

560 Ray C. Hunt Drive
P.O. Box 800754 - UVA Medical Center
Charlottesville, VA 22908

DONATE NOW TO SUPPORT OUR WORK!

This email was sent to << Test Email Address >>
why did I get this? unsubscribe from this list update subscription preferences
Epilepsy Foundation of Virginia · 560 Ray C. Hunt Drive · Charlottesville, Va 22903 · USA

Join our mailing list here!

EFVA Annual Report for Fiscal Year 2023-2024

Annual Report of the Epilepsy Foundation of Virginia (EFVA) 2023-2024

2023-2024 ANNUAL REPORT

EPILEPSY FOUNDATION OF VIRGINIA

PROMOTE AWARENESS, PROVIDE ASSISTANCE
WWW.EPILEPSYVA.COM

DONATE TO KEEP OUR PROGRAMS GOING!

Dear Donors:

During the last fiscal year, from July 2023 to July 2024, many of you were so kind as to donate to EFVA or have your companies or institutions donate. Thanks to your generous giving, we were able to continue the many programs we have for the 85,000 Virginians with epilepsy. In the annual report below, you will find an expenditure pie chart, as well as a list of the programs, which we can keep running thanks to your financial generosity. 85,000 Virginians with epilepsy are in your debt.

Gratefully yours,

Suzanne Bischoff
Executive Director
Epilepsy Foundation of Virginia

Go to www.epilepsyva.com/calendar for more information on events.

DONORS

RHODIUM DONORS - $20,000 and above
Dr. Suzanne Bischoff

PLATINUM DONORS - $10,000-$19,999

GOLD DONORS - $5,000-$9,999
Dr. Paul and Dr. Deren Lyons, Sarah Colson, Patricia C. Lane, Walmart, Bon Secours Mercy Health, Loyal Order of Moose Inc., UVA Health, INOVA, Jazz Pharmaceuticals, Inc., SK Life Science

RUTHENIUM DONORS - $1,000-$4,999

John and Deborah Lannen, Brandon Clodius, Anonymous, Blackbaud Giving Fund, Dr. Stacey Epps, Fidelity Charitable, TowneBank, Edward Jones, James Wood High School, Pivot Physical Therapy, Luck Stone, John Wall, Sara Budic, Derek Bauer, Charles Shade, Virginia Energy and Lighting, R.A. Laraway, Neurelis, Carol and Donald Craighead, Dennis Terry, Jeff Roseme, Lauren Llanes, J Best, Mr. Robert and Mrs. Megan Tschannen-Moran, Morgan Stanley, Winchester Neurological Consultants, Inc., Midnight Brewery, Ameriprise Financial, Glenn Catalano, Laurie Sheppard, TwelveStone Health Partners, Nicole Tritaik Insurance Agency, Inc., Verna Cook, Kelly Levasseur, United Way of South Hampton Roads, Catalyst Pharmaceuticals, Inc., Medical College of Virginia Foundation, Home Infusion Richmond, LLC, UCB, Inc., Sentara Health, Reston Bicycle Club, Patient First, Cleveland Foundation, Heather Colson

IRIDIUM DONORS - $500-$999
Nathan Fountain, Dr. Alan Towne, Wendy Parker, Michael Dalton, Clodfelter Machine Inc., Charles & Nancy Rosenblatt Fund of the Tidewater Jewish Foundation, Inc., Brian P. Washington, NeuroPace, Steven Roberts, Wells Fargo Clearing Services LLC, Paul Grabb, Peter Bloom, PayPal Giving Fund, Kelly Gil

OSMIUM DONORS - $100-$499
Kevin Chandler, Charles Clarke, Bobby & Tania Blackwell, Vincent Brigagliano, Daniel Heneghan, Walt & Lisa Stone, Tabb Davis, Miriam Blackmon, James Heneghan, James Hall, William & Kathy Hall, Taylor Manley, Walter Manley, Patricia Boyd, Susan Custer, Valerie Acosta, Heather McLeod, Josie Saunders, Independent Order of Odd Fellows, Katherine Lannen, Douglas and Jennifer McElhinney, Nalini Ayya, Diane and George Edgar Wagoner, The Gray Insurance Co., Martha McLain, Deborah Harriman, David and Linda Fehleisen, Ann Layton, Lisa Brooks, Fay and Jonathan Fretwell, Gregory Cline, Thomas Junod, Dial Love, Jay Snyder, Elizabeth Ruckman, Amanda Wilson, Beth Gourley, Francis Heneghan, Amy Wainright, Lindsey Feldman, Andrew Feldman, Linda Mantiply, Karen Fagan, Mark Terry, Susan Armentrout, Justine Cohen, Paul Greeley, William Clarke, Moshe Heyn, Michael Wallace, Kitty Blackmon, Jeffrey Gardner, Durrell Boyd, Orien Dalton, James Neale, John Clarke, Carolyn Oglesby, Sally Witt, Janet Baggott, Lisa Tuggle, Shantese Smithers, Roselyn Cottrell, Robin Scott, Renee Williams, Mary Murphy, Susan DeLancy, Eric Floranda, William Heneghan, Ellen Purpura, Ronny Laver, Todd Brock, Lawrence Morton, Amy Davis, Ann Johnson, Ned Farley, Jose Robles-Maldonado, Caymran Cummings, Sandra Dicamillo, Kim Clark, Catherine Kominic, Heather MacLeod, Martha H Hartz, John and Jean Carter, Herbert and Elon Perlin, Donna Mercer, Vinny Donnelly, Laurien Dowdy, Carol Lensch, Erik Lensch, Kroger, Epilepsy Foundation, Benjamin Knowles, Beth Owermohle, Earl So, Kimberly Jones, Laura Agaba, Mary Feltault, Penny Singlemann, Ruchelle Buenaventura, Tiffany Keever, William Manley, Draft Electric & Plumbing Service, Inc., Stephan and Shirley Corbin, Angela Meade, Zoe-Ann Copeland, Jordan Mooney, Anonymous

PALLADIUM DONORS - up to $99
Dr. A. M. Rijke, Sibylle Rotach Hunt, Peggy Sloan, Gina Washington, Charles Wilber Jr., G. Frank and Tracy Dunlap, Jeffress and Teresa Given, Joe and Brenda Tankesley, Patricia and W.C. Arey, Jean Gibson, Donna Garner, Pam Cowgill, Nancy Hall, Leegie Kirby, Marianne Simmons, Sue Smith, Jennifer Faith Strobel, Dale and S. Lee Heizer, James and Teresa Hott, Samuel and Beverly Richardson, Carol Heizer Wojciechowski, Ann Heizer, Joseph Emmett Lail, Holtzman Oil Corporation, Judy and Guy Eavers, Mary Frances Chittum, Fredericksburg Regional Food Bank, Stacey Little, Mark Stevens, Brittany Yost, Wendy Talarico, Joseph DiPiro, Joanna Diaz, Jason Heyn, Marty Heyn, John Heyn, Gary Weidhaas, John Kinney, Patricia Mueller, Travis Marley, Amory Dugan, Eric Mayl, Salome Loera, Adam Liebler, Mary Kauffman, Elhum Shamshiri, Lillian Reynolds, Barbara Donegan, Shirley Ramsey, Doreen Marquis, Ken Kwartler, Ginger Germani, Cary Doak, Kimberly Warren, Angie Fox, Kathryn Nichol, Sheila Rieser, Alicia Lugg, Jeff Elias, Kathie Kelly, Gina Henderson, Dawn Legg, June Walthall, Donna Broshek, Alycia Winter, Rashell Younger, Liam Winters, John and Patricia Smith, Charles and Lou Ann Belvin, Bank of America, Carol Thompson, Janice Tokarsky, Erica Wolfe, Rhiannon Maxton, Lola Shank, Pat McClellan, Donna Applebee, Jeremy Ingram, Melinda Monet, Laura Ford, Jason Rush, Joey Jarvis, Bryant Clarke, Sean Plunkett, Rhonda Deputy, Janet Lynn, Doris Freund, Amy Kritzman, Debbee Kiel, Holly Schrank, Dale Chimerofsky, Jim Fry, Randall Anthony, Owen Thompson, Michelle Eddy, Nancy McMicken, Robert Sillmon Jr., Frank Santa, Colin William, Rosalba Rosario, Theodore Stout, Shannon Reardon, Cathy Padgett, Wendy Dee, Nancy Cundiff, Rhoda Ballantyne, Tyler Hawkins, Amanda Faith, Maggie Shanley, Kim Flanders, Deanna Reger, Gmen RC, Russ Brickey, Alice Huggins, Marianne Bowen, Tami Phoenix, Steve Heller, Margaret Brooke, Alejandro Mattiuzzo, Amie Knapp, April Marshall, Erin Dudley, Katie Zimmerman, Laura Lay, Susan Cohen, Heather Davis, Elizabeth Marie, Shannon Martin, Alejandro Mattiuzzo, Michael Siefring, Sandra and Lynwood Hutchens, Carlton and Sharon Brydge, Jamie Swann, Brielle Parker, Sherry Buenaventura, Julie Mick, Leesa Gauthier, Malinda Hargrove-Miller, Richard Rencher, Devonee Shearer, Anonymous

Thank you to our 53 anonymous donors who generously gave this year through social media, including through birthday fundraisers on Facebook, via Instagram, and through Humble Bundle!

560 Ray C. Hunt Drive
P.O. Box 800754 - UVA Medical Center
Charlottesville, VA 22903

DONATE year end donations very welcome.

This email was sent to << Test Email Address >>
why did I get this? unsubscribe from this list update subscription preferences
Epilepsy Foundation of Virginia · 560 Ray C. Hunt Drive · Charlottesville, Va 22903 · USA