EFVA’s Newsletters & Annual Reports

November 2024 Newsletter

Epilepsy Foundation of VA November 2024 Newsletter

NOVEMBER 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 Instagram and X (Twitter)!

THANK YOU
for making our 9th Annual Tour de Midnight a great success!

Around 420 participants enjoyed the gorgeous weather in Vienna, Williamsburg, and Rockville!

This year, Team Elizabeth won with about $10,000. Our sponsorships were great thanks to all the pharmaceutical representatives and large medical institutions chipping in. The preliminary total amounts to $119,000. This does not include the many the sales at the event and the in-kind donations from the breweries, participants, and volunteers.

Platinum Sponsors: $7,500

Neurelis, Inova, SK Life Science, UCB, UVA Health, VCU Health

Gold Sponsors: $2,500

Catalyst Pharmaceuticals, Inc.,Jazz Pharmaceuticals, Inc., Ceribell, Bon Secours, Virginia Electric Lighting

Silver Sponsors: $1,000

Ameriprise, Athletico Physical Therapy, Crater Community Hospice, Morgan Stanley, Nicole Tritaik Insurance Agency, Sumitomo Pharma, Towne Bank, TwelveStone Health, Vital Care Home Infusion Richmond LLC, LivaNova

Epilepsy hero speaker Meredith McMath (left) with speaker Dr. Mohankumar
Kurukumbi (right), an epileptologist at Inova Epilepsy Center.

Thank you to our speakers and organizers:

Speakers:
Bee Martin Lee, Ethan Boudreau, Dr. Kurukumbi, Meredith McMath, Maddy Reddan, Dr. Epps

Organizers:
Dr. Epps, Dennis and Missy Terry, Amy Dudeck, Erik Conrad, Lauren Shirley, Suzanne Bischoff

Pictures:

Todd Patrick, Suzanne Bischoff, INOVA, Ethan Boudreau

Special thanks to our satellite locations in Williamsburg and Vienna and all the volunteers there for helping to make Tour de Midnight a success!

TOUR DE MIDNIGHT PHOTOS

Thank you to all participants- see more photos on the website !

(If you took pictures at any of the TdM locations, please share them with us!)

Thanks to Winchester Neurologists for organizing a great 5k race on October 26!

The Winchester race was a great success. We had beautiful weather, almost 70 participants, and an estimated income of over $15,000.

Thanks Winchester neurologists for your great cooperation!

Platinum Sponsors: $2,000

UCB Fintepla, White House Foods

Gold Sponsors: $1,000 - $1,999

Catalyst Pharmaceuticals, Jazz Pharmaceuticals, SK Life Science,
Valley Health, Neurelis, UCB Briviact

Silver Sponsors: $500 - $999

IAT, Valley Vital Care, Winchester Open MRI

Bronze Sponsors: $250 - $499

Bank of Clarke County, National Spine and Pain

Thank you for running, walking, biking, donating, and fundraising!

SHARE YOUR EPILEPSY STORY

November is National Epilepsy Awareness Month! We encourage you to share the story of your epilepsy journey at your favorite support group.

New resource: seizure-safe medications for common illnesses

Maddy Reddan found this safe list of over the counter (OTC) medications. Epileptologist Dr. Nathan Fountain agreed in general with this list, and added:

"There is no evidence that stimulants like pseudoephedrine precipitate seizures. My advice is to find one specific antihistamine and always use that one for a running nose. Find one specific decongestant, like Sudafed, and always use that for a congested stuffed up nose. Once you find you tolerate it well, then you don't need to worry about it" and you can continue using it from there on out.

For more, see:
"The Flu Season: Do you need to worry about medication interactions?" National Epilepsy Foundation
"What medications are safe to take with seizure medications if you have a respiratory bug?" UF Dept of Neurology
"Coronavirus and Epilepsy" Australian Epilepsy Foundation

Thank you to XELEVATE for having EFVA as a beneficiary of their Flying Fest Fundraiser!

Thanks to Christine for representing the Epilepsy Foundation of Virginia at the Flying Fest Fundraiser, an outdoor event held in Leesburg, Virginia at XELEVATE, a Drone/UAS flying facility!

SPECIAL SUPPORT GROUP WITH DR. SUZANNE BISCHOFF ON NOVEMBER 18

Dr. Suzanne Bischoff will be discussing HOBSCOTCH and other memory courses.

Email lauren.shirley@gmail.com for the Zoom link. Thanks!

Click here for our revised memory booklet!

After December, EFVA shall have three staff members who are trained in HOBSCOTCH and other memory courses.

OTHER UPCOMING SUPPORT GROUPS

Monthly epilepsy support groups are offered by Inova Neuroscience and Spine Institute (1st Tuesday every month) and the EFVA Central Virginia Chapter (2nd Monday every month)! See our calendar for more details.

UPCOMING 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 at efva.lauren@gmail.com or Lowell Evens at efva.evans@gmail.com to request the Zoom link.

LIVING WITH EPILEPSY:
Traveling for the holidays with epilepsy

Holidays can bring lots of joy and fun, but also a lot of stress for those of us with epilepsy or who have loved ones with epilepsy. You are not alone! Keep reading for tips from Henry Ford Health on how to make packing, planning, and traveling easier and less stressful for you and your family.

1. See your doctor.

Ask about any precautions you should take during your trip
Have your doctor provide a letter explaining your condition, the medications you take and any implanted device – which you can show to airport security or any other mass transportation officials.
Get a copy of your medical records to carry with you, in case you need to seek treatment while out of town.

2. Make a medication plan.

Long flights, delays, and time zone changes can mean a significant change in your routine and the potential for missed medications. “To ensure that you have the medication you need, when you need it, there are several steps you can take to make a medication plan,” says Dr. Smith. These include:

Pack extra medication to last more than the length of your trip.
Keeping medication in the original bottles.
Packing some in both your checked and carry-on baggage, in the event that one is lost or stolen.
Writing down your pharmacy contact information, in case you need to get a refill.
Setting alarms on your watch or phone to ensure you can take your medicine on time, even if you will be in a different time zone.
Asking your doctor about taking rescue medication to help adjust to any altitude changes.

3. Carry identification.

Carry a medical ID bracelet and, if you have a vagus nerve stimulator or responsive neurostimulator (RNS) implant, make sure you have your device registration card.

4. Be proactive in communicating.

If you are flying, let TSA know about your epilepsy.

The TSA offers detailed instructions on special procedures that people with medical conditions should follow to ensure a smooth security check, including for medications and implants.
If you are traveling alone, you can also let a flight attendant and your seatmates know about your epilepsy.

5. Bring a travel partner.

If possible, travel with a friend or loved one who knows how to provide seizure first aid. They can also explain the situation to those around you.

6. Get enough sleep.

Lack of sleep, being overtired and jetlag may increase your seizure risk. It’s easy to get overtired while traveling, so make sure to get enough sleep and plan some extra time for rest and recovery.

7. Wash your hands.

Especially during cold and flu season, it’s important to practice good hygiene and minimize your exposure to germs. If you get sick, it may increase your seizure risk.

8. Get vaccinated.

Traveling to an international location? “With the exception of some anti-malarial medications, most vaccines or preventive antibiotics will not affect your epilepsy or interact with your medication,” says Dr. Smith. “When in doubt, consult with your doctor.”

9. If necessary, consider something other than air travel.

If you have uncontrolled seizures, you may wish to avoid air travel and take a bus or train. Even if you avoid all mass transportation and choose to drive to your out-of-town destination, you should limit the number of hours you drive and take regular breaks to avoid getting too tired. Also be aware that states have different regulations regarding driving and epilepsy.

10. Sit back, relax and enjoy your trip.

For some people with epilepsy, stress can be another potential seizure trigger – and traveling certainly can be stressful. With traffic, crowds, long lines and rushing to get there, it’s easy to get anxious. However, it’s important to remain calm, even when things don’t go quite as planned.

Source:
"10 Tips For Traveling With Epilepsy." Henry Ford Health Staff (2023).

For more, see:
"Travel Tips." National Epilepsy Foundation.
The International Bureau for Epilepsy Traveller's Handbook contains general advice for travelers, covering such topics as accommodation, insurance, driving and getting around. It also includes a set of First Aid instructions, reminders regarding medication and a very practical selection of phrases. There is also a list of all members of the International Bureau for Epilepsy with full contact details, as well as information regarding driving regulations, and a link to many national authority driving associations worldwide.

"USE A HELMET, PREVENT EPILEPSY" CAMPAIGN

During and around the Tour de Midnight on October 19th, the Epilepsy Foundation of Virginia distributed 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!

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 2023-2024 Financial Documents:

990 Form

Audit

Annual Report

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

DONATE NOW TO SUPPORT OUR WORK!

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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.

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Epilepsy Foundation of Virginia · 560 Ray C. Hunt Drive · Charlottesville, Va 22903 · USA