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Letter from
Sindi
Wow! What a fantastic year we’ve had! I’m so proud of our Team and all the people who worked so hard this year to help us truly impact the community we serve. 2019 was, indeed, a pivotal year.
Hey y’all, we made a law! We passed Sam’s Law! Sam’s Law (HB 684) will require all Texas public schools to train their personnel in seizure recognition and first aid. Texas is the 3rd State in the country to pass “Seizure Smart School” legislation. This is a GREAT accomplishment and couldn’t have happened without a ferociously passionate advocate (Shari Dudo) who led our efforts. Also in 2019, Texas’ Compassionate Use Act was expanded to include ALL people with epilepsy to have access to low-THC products. This access could make seizure freedom a real possibility for the 516,640 people with epilepsy in Texas. EFCST played an integral role in these legislative initiatives that will positively impact the lives of people with epilepsy in Texas.
In 2019, our programs continued to grow. We established a virtual support group to help respond to individuals that cannot attend our traditional meetings. This fully accessible forum provides access to any interested participant regardless of their location or limitations to enjoy the interactive support group forum. In May, we awarded our first Erika Knode Memorial Scholarship to three young women with epilepsy at our Epilepsy “Have A Heart” Golf Tournament. It was exhilarating to support the future for these 3 outstanding young ladies. In June, we had our largest Camp Brainstorm ever! We sent more the 70 campers to Camp! We added sailing to the list of activities, and the children sailed in Copano Bay with dolphins! It was a sight I will never forget!
As if that wasn’t enough to make 2019 amazing, our Walks to END EPILEPSY in Austin, San Antonio, and the Rio Grande Valley smashed all of our fundraising records! We saw an incredible spike in participation from the community and our Walks raised nearly $60,000 more than last year! Our Walk to END EPILEPSY – San Antonio was especially successful with 1,505 participants and more than $120,000 raised. The past year has been a wonderful year for the Epilepsy Foundation of Central & South Texas. We are blessed by wonderful Boards of Directors, and a dedicated and loyal staff who care greatly about the people we provide services to.
Thank you for your unwavering support in helping us provide life-changing, essential services to those with epilepsy. We know that with your help, we’ll be able to continue to respond to the needs of our community and continue in the fight to END EPILEPSY!
This Season, please give the gift that means more than all the others combined…the gift of health. You may send your gift to the Epilepsy Foundation Central & South Texas or give online.
Please address gifts to:
Epilepsy Foundation Central & South Texas
8601 Village Dr., Ste. 220
San Antonio, TX 78217
With you, in the fight against epilepsy,
CEO, Epilepsy Foundation Central & South Texas
Serving Central & South Texas
The most important part of our mission is and has always been the people.
At the Epilepsy Foundation Central & South Texas, we’re dedicated to empowering people with epilepsy to lead their best lives. Our job is not one we take lightly. Every moment we’re working to provide comfort, support, and resources to those who have nowhere else to turn. Through free seizure clinics, self-management programs, free mental health counseling, youth development programs, and community events, we served 18,628 people and provided 108,990 services in 2019.
People Served in 2019
Services Provided in 2019
Information & Referral
52,905 Calls for assistance answered
54,233 Case management calls
Intensive Services
139 Self-management participants
459 Support group participants
173 Mental health counseling sessions
Health Services
1,721 Patients received an epilepsy service
944 Diagnostic tests
513 People received emergency medications
Everyone who encounters epilepsy has a story and we're here to share them.
No two people experience epilepsy the same way. Part of our mission is to bring awareness to the community about epilepsy and the best way to do that is to share the stories of the people we work with every day.
We draw inspiration from the people we work with every day. Time and time again, our community has proven to us that they are some of the bravest, kindest people we know. This past year we’ve told the stories of 14 different people with epilepsy and their families.
Fundraising Makes a Difference
Thanks to our supporters, 2019 was a record breaking year in fundraising.
In 2019, all three of our Walks to END EPILEPSY, in Austin, San Antonio, and RGV, blew through our goals with 2,361 people who joined us in the fight to END EPILEPSY and with $165,149 raised to help people with epilepsy lead their best lives.
We were also given the opportunity to bring awareness to people who had never heard of epilepsy through several grassroots events. We want to give special thanks to La Llorona for bringing awareness to the art community and also to Lorie Martinez and Naomi Villanueva for organizing the Bee County Awareness Day and Walk for its 5th year in a row!
Community Support Matters
$39,709 Walk to END EPILEPSY – Austin
$15,694 Amplify Austin Online Giving Day
$97,693 Walk to END EPILEPSY – San Antonio
$38,733 Epilepsy “Have A Heart” Golf Tournament
$2,076 Big Give SA
$27,747 Walk to END EPILEPSY – RGV
$
Trinity Title Chili Cook Off
$
Bee County Epilepsy Awareness Day
$
The Upside Down presented by La Llorona
$
Stephen King Horror Fest presented by La Llorona
We're overwhelmed with the amount of support we've received from the community this past year.
We’re not joking when we say everything’s bigger in Texas! There’s no doubt that 2019 was our biggest year yet, and we couldn’t have done it without the support of the epilepsy community here in Central and South Texas. From our patients to our providers, we’ve showed everyone how Texas is epilepsy strong!
Advocating for the Future
This year, we passed a law to make Texas public schools safer for students with epilepsy.
With the help of some remarkable people, Gov. Greg Abbott signed House Bill 684, better known as Sam’s Law, into law on June 11, 2019. Sam’s Law was first introduced by Rep. Travis Clardy and requires all public school personnel to be trained in seizure recognition and seizure first aid. Now, FREE training is provided to all Texas public school personnel to better prepare them for the eventuality of a seizure.
Physician Referral
A physician registered with DPS and meeting the qualifications described in HB 3703 may prescribe low-THC cannabis.
Dosage Restrictions
Dosing is restricted to low-THC cannabis, not to exceed 0.5% THC. The same restriction does not apply to other cannibinoids.
Coverage
CBD is not covered by insurance. Costs vary from patient to patient.
In 2019, HB 3703 expanded Texas' Compassionate Use Program.
The expansion of the Texas’ Compassionate Use Program (UCP) now makes low-THC cannabis more accessible for people with epilepsy and other incurable diseases. Now, any patient with epilepsy has access for a referral, and a prescription only requires the referral of one physician instead of two.
Lily Flowers traveled to Washington, D.C. from the Rio Grande Valley to be a voice for people with epilepsy.
Lily Flowers from the Rio Grande Valley was this past year’s Speak Up Speak Out! representative for the Epilepsy Foundation Central & South Texas. Traveling to the country’s capital with EFCST staff members, Lily spoke with several representatives of the House to advocate for funding for new and innovative research for epilepsy treatments.
Read all of Lily’s story in our Newsroom at efcst.org/newsroom.
Educating the Community
At EFCST, we use education to empower the community in the fight to END EPILEPSY.
Sometimes, having epilepsy can make it feel as if you aren’t in control of your own life or body. At EFCST, we provide a variety of self-management programs to help empower people with epilepsy to take back their control. With our HOBSCOTCH memory program, PACES in epilepsy program, and several youth programs, we’re helping our community lead independent lifestyles.
This past year, we also used education in our fight to END EPILEPSY. In 2019, 7,653 people received community education or training from us. With more people educated about epilepsy and the issues it presents to those who have it, we’re preparing our community to help their friends, family, and colleagues with epilepsy.
Eat, Sleep, Camp, Repeat.
5 Medical Volunteers
Our medical volunteers ensured that our campers had a educational, fun-filled camp experience in a safe and supportive environment.
32 Camp Counselors
Outstanding and excellent counselors are the key to a successful camp experience. This year, our camp counselors showed amazing dedication and interest in our campers and we couldn’t have done it without them!
76 Campers
In 2019, we took 76 kids with epilepsy to Camp Aranzazu to have a memorable, traditional camp experience. Not only did our campers sail, kayak, and zip-line, but they built friendships that will last them a lifetime.
Here's what parents had to say about Camp Brainstorm this year...
The opportunity for the kids to be with other kids who understand their challenges, and be allowed/challenged to do things they may not normally participate in is PRICELESS. My child came home with newfound confidence. For parents, we are a group who, for many, have watched our kids go through life threatening events. Because of some of the medical concerns that come along with these kids, sending them even to a new day camp can be very stressful for parents. [Camp] Brainstorm takes a lot of that stress away. It allows us a much needed few days to take care of ourselves, allowing us to be better caregivers to our kids. For parents, it is a priceless opportunity.
You cannot put a price on what Camp Brainstorm offers a child. For my daughter, it completely changed the way she thinks about herself and her abilities. Camp taught her she’s not alone. It also taught her that despite epilepsy, she can do anything she sets her mind to. As parents, you can tell this to a child, but there is nothing better than having a child experience this for themselves and see it in others who are just like them.
Camp Brainstorm allows my daughter to feel normal. She has made friends with kids that she can talk to about epilepsy — one who even visited her in the hospital during a long, tough evaluation. Camp Brainstorm also gives me a chance to let go and not stress about her safety. She is more independent and confident because of it. The counselors are fun and positive role models and my daughter can’t wait to give back when she is old enough.
You really liked us on social media this year and we felt it!
In 2019, we expanded our audience, especially on our social media platforms. We more than doubled our followers on Instagram (wow!) and you shared us on Facebook 8,799 times!
This year, we shared more stories of people with epilepsy and brought more news to you through Facebook, Instagram, Twitter, and LinkedIn. Your shares, views, and likes are pivotal in the fight to END EPILEPSY in the digital age. The more you share, the more you like, the more awareness you’re bringing to YOUR community about epilepsy and the effects it has in so many lives.
On Instagram, you sent us 109 purple hearts.
1,095 New Followers
780 New Page Likes
1,127 Posts
8,799 Shares
5 Positive Reviews
514 New Followers
223 Posts
6,264 Likes
417 New Followers
588 Tweets
904 Likes
265 Retweets
Who We Are
In 1995, Sindi Rosales stepped in as Executive Director for a failing organization and turned EFCST into what it is today.
Sindi’s ferocious passion, dedication, drive, and determination were inspired by her daughter Jessica whose life was dramatically and forever changed after being diagnosed with Rasmussen’s Encephalitis and undergoing a hemispherectomy in 1994. Watch Jessica’s story and discover the inspiration for our organization.
We added some amazing new members to our team in 2019 and celebrated anniversaries with 11 staff.
At the Epilepsy Foundation Central & South Texas, we’re more than colleagues — we’re family. We welcomed several new members and we’re thankful to celebrate anniversaries together this past year. Our Clinic Manager Christine Calderon celebrated her 9th year with EFCST while we greeted a new Patient Specialist Melinda Diaz to our clinic team.
This year our team triumphed over epilepsy, serving our community with everything we have to offer. Whether it’s our Social Services Coordinator Kathy giving referrals to the newly diagnosed or our Program Associate Denise leading us through Camp Brainstorm, our family is filled with quality, genuine people who provide quality, genuine care.
South Texas Board of Directors
Michael Girouard
Christine Gorddard
Terry Hartman
Tracy Biltz
Blake Anderson
Lizzy Aranibar
Francesca Barajas
Barbara English
Janine Hornbeak
Jeff Jung
Carl “Tex” Morgan
Jane Morrison
Jose Ochoa III
Alison Packard
Sarah Parker
Harry Wright Jr.
Scott Verstuyft
Central Texas Board of Directors
Traci Smith
Marc Salvato
Leanna Dando
Christina Burke
Henry Catoire, III
Todd Cione
Darlene Corley
Debbie Gomez
Katie Graham
Laurel Griffin
Gina Helsel
Miriam Jackson, NP
Susan Kimball
Shila Leos
Joe Lopez
Mary Beth Pickerton
Wesley Price
Vijay Ram
Amber Ross
Jeffrey Titus, PhD
Professional Advisory Board
C. Akos Szabo, MD
Sheldon Gross, MD
Sidney Atkinson, MD
Colleen Barthol, PharmD
Jose Cavazos, MD
David Gonzales, PhD, ABPP
Erica Gunderson, BSN, RN, SCRN
Jenny Hsieh, PhD
Daniel Hyun, MD
Janice Jordan, RN
Kameel Karkar, MD
Sreekanth Koneru, MD
Linda Leary, MD
Octavian Lie, MD
Marina Martinez
Sylvia Martinez, REEGT
Lola Morgan, MD
Adetoun Musa, MD
Sahar Nassiri, PA
Alex Papanastassiou, MD
Samiya Rashid, MD
Charlotte Rhodes, MHA, CCRC
Mark Shapiro, PhD
Jennifer Sharron, MD
Susan Sonenberg, PA
Azreena Thomas, MD
Jeannine Thomas, PS
Florence Wall, PA
Wendy Wu, MD
Gennine Yahya, RN
43% of our staff and Board have a direct personal connection to epilepsy.
Special Thanks
Thank you to those who made 2019 truly special.
Central Texas Board of Directors
South Texas Board of Directors
Professional Advisory Board
Anupama Alareddy, MD
Sidney Atkinson, MD
Makayla Benkula
Deborah Briggs, MD
Chuck Brown
Rep. Travis Clardy
Dave Clarke, MD
The Cox Family
Claudia Crunelle
Shari Dudo & The Purple Warriors of Texas
Ronda Ebner
The English Family
The Flowers Family
Michael Girouard
Katie Graham
Kameel Karkar, MD
Kate Labiner, MD
Octavian Lie, MD
Lola Morgan, MD
Stephanie Nichols
Blake O’Lavin, MD
Marc Salvato
The Smith Family
Alissa Engel Spears & Family
Akos Szabo, MD
Azreena Thomas, MD
Thank you to all the volunteers who donated 6,231 hours of their time in 2019.
Alpha Phi Omega of Trinity University
ICB
Overly Chromatic
PCSI
Pre-Medical Society of UTSA
Round Rock Sweethearts
UTSA Voices
…and all of our individual volunteers.
Thank you to all of donors that make what we do possible.
Donations of $500 and above
Aerojet Center LLC
Alamo Heights Night LLC
Alamo Kiwanis Club Charities, Inc.
Alamo Neurology Consultants, P.A.
American Fundraising Foundation, Inc.
Angell Plumbing Inc.
Anonymous
Aquestive
Rebecca Aranibar
Sara Lizzy & Roberto Aranibar
Chris Armitage
Sidney Atkinson, MD**
Aus-Tex Towing & Recovery, LLC
Austin Epilepsy Care Center
AUSTIN TELCO
John Avery**
Benton-Georgia, LLC
Charlie & Tracy Biltz
Mary Pat Bolner
Brain Sentinel
George & Gene Burton
Robert Casillas
Chapparal Womens Club
Chasqui Spine & Orthopedics
CHC Community Health Charities
Child Neurology Consultants Austin
Kathy Clark
Dave Clarke, MD
Robert Cline
Community First Health Plans
Compassionate Cultivation
Cook Children’s
Rodney Cunningham
CVS Specialty Pharmacy
Ashley & Damon Dennett
DHR Health
Documation
Driscoll Health System
Drought Family
Eisai Co, Ltd.
Anna Elsesser*
Emergency Scan Global, LLC
Erika Knode Memorial Foundation
Frost Bank
Regina Ezell
Chris Fashek
April & TJ Flowers
Blanca Garcia
Georgetown Texas Area Car Club
Joy & Michael Girouard
Christine & Gregory Gorddard
Gordon Hartman Family Foundation
Greenwich Biosciences
HALFF Associates, Inc.
Harvey E. Najim Family Foundation
Lee & Gina Helsel
Hill Country Water Gardens & Nursery
Homer J. Morris Middle School PTO
Daniel Hyun, MD
Jeffrey Jung
Keep It Quiet, LLC
Randall Klaus*
Aleisha Knochenhauer
Kate Labiner, MD**
Christopher Lake
Dan Lanfear
LivaNova
Live Oak Unitarian Universalist Church
Danielle Long
Martin Marietta
Nancy & Thomas Maxwell
Deborah McNair
Medtronic
Mercedes-Benz of San Juan
Merriman Foundation
Elizabeth Milvo**
Montage Marketing Group
Lindsay Nation
NeuroPace
Norton Rose Fulbright
Blake & Elizabeth O’Lavin
Old Republic Title
Jeffrey & Nina Otchis
David Padilla
Carlos Pena
Physicians Plaza, Ltd.
Kathie Piland
Robert Wood Johnson Foundation
Girls on the Run
Joey & Dominique Rosales
Sindi Rosales
Patricia Ross
Round Rock Women’s Club
J. Kevin Rucker
Thomas W. Sabin Jr.
Lauriann Samaniego
SAMCO Capital Markets, Inc.
San Antonio Spurs
Sanford Schmid Trust
Security Service FCU
Seton Healthcare Family
SK Life Sciences, Inc.
Erik Stagner
Robert & Heidi Stevener
Supernus Pharmaceuticals Inc
Surterra Wellness
SWBC Professional Employer Services
Texas Realty Capital LP
Texas Youth Development Corporation
The Children’s Hospital of San Antonio
The Packard Law Firm
The Riklin Charitable Trust
The Total Source
Azreen Thomas, MD, FAES
TopGolf
Thomas Turner
UCB, Inc.
University Health System
Upsher-Smith Laboratories Inc
University of Texas Rio Grande Valley
UT Health San Antonio
Valero Energy Corporation
Randy Walker CPA
Walmart
WCM Texas
Westar Alamo Land Surveyors, LLC
Whataburger
Robin Whitehall, MD**
Sarah Williams
*Memorial & Honorary Contributions
**In-Kind Donations
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