Epilepsy Talk

Epilepsy Support Groups | January 28, 2019

One thing I’ve discovered is the search for support groups is endless — and seldom successful. Unless you live in a metropolitan area.

But, if you do find a support group, you’ll find an amazing wealth of camaraderie, compassion and caring.

Not every group does the same things. Even groups with similar activities may have different results because of the individuals involved…but think of it as a learning and bonding experience.

You’re interacting with people who share a similar illness, but perhaps different solutions. You can share your feelings, fears, concerns and perhaps get answers.

But most importantly, you can join a community of caring and know that you’re not alone.

To be honest, I’ve started a support group with the help of my local EFA and a local hospital – complete with an epileptologist!

We have an established time and place to meet…with some materials available…snacks…and occasionally a guest speaker. Plus, everybody gets their fair share of time in with questions, suggestions and even resources not everyone’s familiar with.

I know that starting a support group is definitely not for everyone. However, there are resources available where you can get the help – and materials – you need.

The Epilepsy Foundation, as I found out, is only too eager to help…affiliates can provide information and referral assistance; maintain individual and family support services. To find one in your area simply enter your zip code, state and hit “search.” https://www.epilepsy.com/affiliates

There’s another interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy. Friends and family members are also welcome. On the site, there’s an interactive map of Epilepsy Meet-Ups around the world.(And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/

“Add Coach” provides advice on how to start and run a support group. http://www.addcoach4u.com/support/howtostartasupportgro.html

Now, here’s a list of Adult Epilepsy Support Groups across the country that I’ve compiled. Each is listed by state, alphabetically. Hopefully it will be of help.

If you have any additions or suggestions, please, sing out!!!


The Epilepsy Foundation of Arizona offers a number of monthly epilepsy support and empowerment groups across the state, that provide individuals with epilepsy and their families, the opportunity to meet, share resources, speak with medical professionals and unite. View their calendar for more details. https://epilepsyaz.org/epilepsy-support-empowerment-groups/


Support groups are led by either trained professionals or peers with extensive personal experience coping with epilepsy and its impact on families and caregivers. These support groups provide knowledge and understanding along with an opportunity for attendees to share experiences and resources in a confidential setting.

NorCal epilepsy support groups with details including: date, time, facilitator(s) and contact information. Enter your address or zip code to find support groups near you. If you do not see a group in your area, we welcome you to contact us to begin the process of creating one in your county!  http://www.epilepsynorcal.org/support-groups/


The Connecticut Epilepsy Advocate has five support groups which meet monthly. They include: Adults Living With Epilepsy, Ability Beyond Disability, Middletown Parent Support Group, Stamford Support Group and Groton Support Group. For further information, Email: https://ct-ea.org/support-groups.html


Florida State Support Groups link you to meetings in communities throughout the state.  The groups are generally free and open to anyone with epilepsy. Some groups are also open to friends and family members. To locate a support group near you, locate the county you live in or the closet county. Email: http://www.epilepsyfl.com/support-groups/


The Epilepsy Foundation of Hawaii has many services including: Support Groups, Seizure First Aid Training, Educational Outreach, Referrals to epilepsy specialists for adults and children, Referrals to social workers and community support, Advocacy Services (employment and discrimination issues), Information on epilepsy treatment, available medications, first aid and safety issues as well as Printed epilepsy education materials.

To get additional information or request any of these services, please call the office at (808) 528-3058 or email us at efh@epilepsyhawaii.org.


The Epilepsy Foundation of Greater Chicago, whether you’re a parent of a child with newly diagnosed epilepsy and in search of guidance from those who’ve been there, an adult with epilepsy who’s looking for advice and encouragement from others, or just someone looking for camaraderie from others who understand the challenges of living with epilepsy, they have a support group that will probably help you. They also have groups specially designed for caregivers and loved ones. Most groups meet monthly, but schedules and locations can change, so please call (312) 939-8622 before attending any group for the first time to confirm meeting details.


The Epilepsy Foundation Indiana’s main mission 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. To find a list of current events and dates, go to: https://www.epilepsy.com/local/indiana-province-state


University of Iowa Epilepsy Support Groups invites you to listen to speakers, share with others, hear the latest updates from the Epilepsy Foundation’s Iowa Office, and discuss current issues related to epilepsy. Family, friends, and caregivers are welcome. The group meets the third Friday of each month at 6:30 p.m. Location is Iowa City Public Library, 123 South Linn Street, Room D, Iowa CityIA 52240. For further information contact: Contact Roxanne Cogil, Director of Iowa Epilepsy Services, 1-515-238-7660, efiowa@efncil.org


The Epilepsy Foundation of Kentuckiana serves the more than 153,000 children, adults, and veterans living with epilepsy in Kentuckiana. They provide an array of vital programs and services, designed to improve quality of life for those affected by this neurological disease. The purpose is to provide comprehensive epilepsy educational information to individuals and their families when newly diagnosed, or for those who want additional information of a variety of requested topic matters. The Central Kentucky Epilepsy Support Network (CKESN) meetings occur the first Tuesday of every month at the Don and Cathy Jacobs Education Center, University of Kentucky Hospital, 6:30 p.m. – 8:00 p.m., Lexington, Kentucky 


The Epilepsy Foundation of the Chesapeake Region meets is several locations: Columbia Area Group meets the 1st Tuesday Bimonthly at the Savage Volunteer Fire Company. 2019 schedule:  Feb 5th, April 2nd, June 4th, Aug 6th, Oct 1st, Dec 10th. February 5th 2019: Jordyn M. Stuart, PhD, discusses the science behind CBD oil. All meetings run from 7 PM – 8:30 PM

Baltimore Area Group. Meets the 2nd Tuesday Bimonthly in Baltimore. 2019 Schedule: January 8th, March 12th, May 14th, July 9th, September 10th, November 12th.  We’re trying a new time: meetings run from 12:30-1:30 PM. Bring a lunch if you’d like! Meeting will be held at Mt. Washington Mill,1340 Smith Avenue, Baltimore, MD 21209 in the First Floor Conference Room. Please call (301)918-3782 for more information.


The Massachusetts Epilepsy Support Group has meetings held at UMass. Memorial Health Center, 55 Lake Avenue North. Call for details. CONTACT: Marsha Williams, 508-856-4147

Southwest of Boston Parent & Family Support Network Group: Meets 1st Tuesday monthly (not July through Sept. and Dec.) from 7:30-9PM at the Medfield Town Library, 468 Main Street (Rte. 109). For parents of children and teens with epilepsy. Contact: Michelle Gaudet or Christi Barney, c/o EFMRI, (617) 506-6041, Ext.19


The Epilepsy Foundation of Michigan provides up-to-date information on epilepsy and support from others who are coping with the condition. Often, however, lack of transportation, fear of having a seizure, and other factors make it difficult to attend support groups and other community events. In response, Epilepsy Foundation of Michigan’s Learn & Share Conference Calls provide an opportunity to both gain knowledge about epilepsy and related issues and share experiences to help others. Interested individuals can participate in monthly Learn & Share Conference Calls by calling a phone number and entering the conference ID. You can learn more about each call and register online by clicking on “REGISTER”. You can also contact Russ Derry at (800-377-6226 ext. 1302) to register (recommended if you want to register for multiple calls). Dial-in #: 1-774-220-4000. Conference ID: 926764. To register, go to: https://epilepsymichigan.org/page.php?id=447 There also a number of local groups in the Michigan area that offer support groups. For a full listing, go to: https://epilepsymichigan.org/page.php?id=82


The Minnesota Epilepsy Foundation is a  group of people meet on a regular basis to share their experiences and provide mutual support. Connect opportunities include: Adult Events — various events throughout the year for adults with epilepsy. Adult Connect — monthly meetings for adults with epilepsy to interact, receive support, and share resources. Family Events — youth and their families can attend activities throughout the year. And Parent Connect — meetings offered to parents of children (of any age) with epilepsy to connect with each other, receive support and share resources. See calendar for regional group dates and times: http://www.epilepsyfoundationmn.org/calendar/view-all


The Nebraska Medical Center Support Group’s mission is to provide hope and knowledge to epilepsy patients and their family members. Sessions may include educational information and resources, expert speakers on epilepsy topics and time for participants to talk, share their experiences, validate their struggles and celebrate their triumphs. For further information, go to  http://www.nebraskamed.com/Neuro/Epilepsy/Support-Groups


The Epilepsy Foundation of Nevada or The Nevada Neurosciences Institute at Sunrise Hospital, offers support groups for people living with epilepsy as well as their friends and family. They host a free monthly epilepsy support group, held on the second Wednesday of every month at 5:30 pm. in the Sunrise Hospital auditorium.The Las Vegas area Adult Support Group meets the second Wednesday of each month at Sunrise Hospital Auditorium at 5:30pm. The Las Vegas area Teen Support Group meets the second Thursday of each month at Sunrise Hospital Desert Sand Room at 6:30pm. Sunrise Hospital is located at 3186 S. Maryland Pkwy. For further information, Email: https://www.epilepsy.com/local/nevada/support


The Epilepsy Foundation New England’s mission is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. The Epilepsy Foundation New England offers many programs such as Support Groups, Information and Referral, Art Studio E, and Camps. They are located at: 335 Main Street #8, Wilmington  Massachusetts  01887. For further information call (617) 506-6042 or (888) 576-9996


The South Jersey Epilepsy Support Group is a new support group for those who have seizures as well as any family members or loved ones who would like to attend. This is an informal group to meet and speak to others who are facing similar struggles. Meetings are at the Deptford Township Public Library – 670 Ward Drive in Deptford, NJ 08096. If you have any questions or comments please feel free to contact the group coordinator, Michelle McArdle, at deptfordepilepsygroup@gmail.com or “like” the South Jersey Epilepsy Support Group page on Facebook:


The New York Connnects Epilepsy Support Group, addresses the needs of area residents and their families affected by epilepsy, seizure disorder, and related disabilities including traumatic and acquired brain injury, stroke, and developmental disability. Provides: Advocacy, Public Education, Employment Solutions, Information and Referral, Publications: Newsletter, literature and videos on epilepsy.Residential programs, School programs, Summer Camp-CampEAGR, Bilingual Staff, Community and Family Support Services, Service Coordination, Family Reimbursement, Parent/Family Network Program, Counseling and Support Groups. Eligibility: Individuals with epilepsy or a family member with epilepsy or related disability are invited to attend. Areas Served: Chemung, Livingston, Monroe, Ontario, Schuyler, Seneca, Steuben, Wayne, Wyoming, Yates. Address: 1650 South Ave, Suite 300, Rochester, NY, 14620. Telephone: (585) 442-4430   Website: www.epilepsyfoundation.org/rochester/

The Epilepsy Foundation Metropolitan New York’s Support Group provides empowerment programs and support services to individuals and families affected by this seizure disorder. The Foundation also serves the greater metropolitan area with Epilepsy Awareness and Seizure First Aid Training. Since 1967 thousands of people with epilepsy and their families have benefited from EFMNY’s comprehensive social and educational services. Their services include: Counseling, Vocational Services and Job Placement, Respite Services, Service Coordination, Information and Referral Services; Socialization Programs and Educational Presentations. The Foundation also sponsors support groups, community educational presentations and other events throughout the year. For more information, please visit: http://www.efmny.org or telephone: (212) 677-8553.

Northeast Regional Epilepsy Support Group is a virtual support group providing a forum that facilitates and promotes the sharing of common interests, information, and experiences within the epilepsy community. This is an online group which allows you to participate in support activities when you are unable to attend a local support meeting in person and it’s managed by a qualified facilitators knowledgeable on epilepsy-related topics. During these sessions, you have the opportunity to speak with other participants, seek advice, make friends, discover new ideas, share your experiences — good and bad, and help support others managing epilepsy. Benefits: All 60-minute sessions are held through GoToMeeting® Each group is kept small in order to encourage friendship and optimal discussion time (8-10 participants.) Participation in this confidential discussion is expected and encouraged. You are not on camera, so come in your PJs. Please email rzeng@epilepsygroup.com in order to sign up! FREE


The Epilepsy Association of North Carolina, promotes awareness, support, education and growth. Their mission is to engage, encourage and educate in epilepsy. Monthly meetings are held at Paul’s Chapel in Lexington on the 3rd Thursday of each month at 7 p.m. or Thomasville, on the 4th Thursday of each month. For further information, call: (336) 300-468 or email: epilepsyofdavidsoncount@gmail.com

Epilepsy Alliance North Carolina meets at Alamance County (Epilepsy Parent Support Group), Cabarrus and Rowan County, (Parents and Adults), Triangle Area (Epilepsy Parent Support Group), Mecklenburg County (Epilepsy Support Group). Call EANC for more details: (800) 451-0694


Epilepsy Alliance Ohio has five different groups that meet.

Cincinnati, OH area groups:

Warren County Epilepsy Support Group – meets in Mason, Ohio, from 5:30 p.m.-7:00 p.m. on the second Wednesday of each month. Meetings are held in a second floor meeting room at Kidd Coffee (653 Reading Road, Mason, OH 45040).

Hamilton County Epilepsy Support Group – meets in downtown Cincinnati, Ohio, from 6:00 p.m.-7:30 p.m. on the third WEDNESDAY* of each month. Meetings are held at the main office of the Epilepsy Foundation of Greater Cincinnati (895 Central Avenue, Suite 550, Cincinnati, OH 45202). *Changed from Thursdays

Huntington, WV Epilepsy Support Group – meets at Enslow Park Presbyterian Church starting at 6:00 p.m. on the third Tuesday of every other month

Columbus, OH area groups: 

Columbus Adult Support Group — meets the 1st  Wednesday of each month from 6:00 p.m.-8:00 p.m. in the Dempsey Family Education and Resource Center in the Neuroscience Tower at Riverside Methodist Hospital located at 3535 Olentangy River Road Columbus Ohio 43214. Park in the red or blue parking lots, parking passes will be provided.

Columbus Young Adult Support Group (ages 18-30) — meets the second Wednesday of each month from 6:00 p.m.-8:00 p.m. in the Dempsey Family and Resource Center in the Neuroscience Tower at Riverside Methodist Hospital located at 3535 Olentangy River Road Columbus Ohio 43214. Park in the red or blue parking lots, parking passes will be provided.

Columbus Parent Support Group-Meets on the last Monday of each month from 6:30 p.m.-8:00 p.m. in the Dempsey Family Education and Resource Center in the Neuroscience Tower at Riverside Methodist Hospital located at 3535 Olentangy River Road Columbus Ohio 43214. Park in the red or blue parking lots, parking passes will be provided.

Licking County Support Group meets the 3rd Wednesday of each month from 6pm to 8pm at Licking Memorial Hospital, 1320 W. Main Street, Newark, Ohio 43055 in the Moundview Room located by the cafeteria.


The Epilepsy Foundation of Eastern PA Support Groups offer adults, children, parents, friends and family members an opportunity to share emotional support while gaining information and knowledge. Speakers are an important component to the support group process. Groups meet in Bucks County, Center City, Hazelton Area, Lancaster County, Monroe County Lehigh Valley and Wilkes-Barre/Scranton. http://www.efepa.org

Other Pennsylvania support groups include: 

Pittsburgh — Contact Francine at 412-322-5880 to see if there is a discussion group in your area.

York — Contact Gretchen at 717-730-6779 for details about the support group in York.

Hershey — Contact Laura at 717-730-6779 for details about the support group in Hershey.

Johnstown — Contact Greg at 814-799-0345 for details about the support group in Johnstown.

Peer To Peer Linkage 

If you are not able to attend local support group meetings you may be interested in a Peer To Peer Linkage. In some instances, the EAWCP is able to find someone who lives in your local community who is willing to talk with you one-on-one to provide emotional support. Contact the EAWCP if you are interested in Peer To Peer Linkage.


South Carolina Advocates For Epilepsy. For all of you who were looking for epilepsy support in South Carolina, (since there is no EFA office there), you can contact Karen St. Marie in Charleston at the SAFE website: (843) 991-7144  or Email:  http://scepilepsy.org


The Epilepsy Foundation of Middle and West Tennessee has support groups in Dyer County, Memphis and Shelby County, Nashville, Madison County and Cookeville. Their mission is to ensure that people with seizures are able to participate in all life experiences and will prevent, control and cure epilepsy through services, education, advocacy and research.

EFMWT serves 61 counties of middle and west Tennessee with offices located in Bedford, Putnam, and Madison and Davidson counties and provides an array of free programs and services that includes:

Referral and information: In addition to office resources, the Foundation assists clients in obtaining needed services such as Free or Reduced Cost Prescription Medication, Medical Services, Utility Payments, or Low-Cost Housing. Address and contact Information: Epilepsy Foundation Middle & West Tennessee, 95 White Bridge Rd Suite 215, Nashville  Tennessee 37205-1482. Telephone (615) 269-7090 or (800) 244-0768


Houson/Dallas — Fort Worth/West Texas has  

The Epilepsy Foundation Of Texas — has ten different support groups including: The Houston Support Group, The Colin County Support Group, Cook Children’s Medical Center Support Group, UT Southwestern Support Group Dallas Adult Support Group, The Galveston Support Group, Memorial Hermann-Texas Medical Center Support Group, Children’s Medical Center Dallas Spanish Parent Support Group, The Fort Worth Support Group, The Texas Health Resources Dallas Adult Support Group and the DFW 20 Somethings Support Group. (Young adults are invited to join other young adults for events and meetings. Parents are welcome and meet separately. Meetings and events are held throughout the year. For further information, contact EFTX at (888)548-9716. Or Email: http://www.eftx.org/programs-services/support-groups/


The Epilepsy Foundation of Virginia Support Group’s mission is to promote awareness about epilepsy and provide assistance to those with the disorder. To contact our team of regional directors, click on: https://www.epilepsyva.com/ourteam/


The Epilepsy Foundation Northwest Washington has merged with the Epilepsy Foundation forming three new chapters. Please find us at: Epilepsy Foundation Alaska, Epilepsy Foundation Oregon, Epilepsy Foundation, Washington For further information contact us at: Epilepsy Foundation Washington 2311 N 45th St #134 Seattle, Washington, 98103-6905. Or telephone (206) 547-4551


The North Central West Virginia Epilepsy Support Group is a Meet-Up Group, organized by Margaret C.  This group is for people of all ages affected by all types of seizure disorders. We can go the movies, get a bite to eat and talk. Socialize. Make friends and help each other thru life. Lets get connected then go from there. For further information, Email: https://www.meetup.com/North-Central-West-Virginia-Epilepsy-Support-Group/


Epilepsy Foundation — Heart of Wisconsin. Offers services for families, schools, employers and public health workers that engage and educate individuals in order to raise awareness and reduce the stigmas and myths associated with seizures and epilepsy. Locations: Wausau, Green Bay, Antigo, Wisconsin Rapids, Appleton-Fox Cities, Stevens Point For further information, Email: http://facewebsites.com/epilepsyswis/cms-view-page.php?page=support-groups

Epilepsy Foundation — Western Wisconsin. Currently serving 22 counties in Western Wisconsin: Ashland, Bayfield, Barron, Buffalo, Burnett, Chippewa, Clark, Dunn, Douglas, Eau Claire, Iron, Jackson, Pierce, Pepin, Polk, Price, Rusk, Sawyer, St. Croix, Taylor, Trempealeau, and Washburn. Services are provided to over 14,000 individuals and their families with epilepsy. From Community Education programs to Outreach Advocacy, the Epilepsy Foundation of Western Wisconsin offers a wide range of programs. All adults living with epilepsy are welcome.  http://www.epilepsywesternwi.org/support-groups/


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  1. There’s also the Epilepsy Foundation of Western Wisconsin

    Liked by 1 person

    Comment by Cindy Fiser — January 29, 2019 @ 10:33 AM

  2. Not to be negative about EFA, as I am sure many people get help from them that they never could imagine getting some answers from anyone else. But after being at 2 different groups in the state of Virginia, both groups had the same head organizer, which if I knew was the case, 1 would had been all I went to. I was not allowed to EXPRESS & TELL others my realities of what I learned was triggering or causing my seizures, as I was accused of putting fear in everyone there & to suggest that DIET DRINKS being served should not be served, or the snacks & processed foods would maybe not be safe to have in a diet, ”which I did not eat any being 1 hour away from home, I was ridiculed & told out right, that I keep my thoughts to myself, that they were not like me at all. So much for all for one & one for all, as I felt EXCLUDED & REJECTED, yet at one group a doctor who was a health & what you may call a natural remedy doctor, said to me I was doing all the right things, knowing what & how my brain reacted & respond to all I eat & would drink. She even said I told her a few things that she was never aware of that was the same as MSG & ASPARTAME, which she knew a lot about & how it all affected brain health. So be careful of WHO you pick for support, as i found out the hard way that the EFA only supports those who is going to educate themselves on everything that THEY SAY seizures can be caused by what THEY SAY are the triggers or causes, as so many of the EFA staff, never has had seizures in their life to KNOW WHAT IT IS LIKE TO LIVE WITH IT. last month however I did get an EFA rep to send to me an e-mail on FOCAL SEIZURES, which I talked to her after a good 5 years of never calling them for anything. They do remember the things they hear from you, yet they still only hear those things what they totally agree with the medical world in the seizure education world, that they only promote & talk about 1/3rd to 1/2 of it. Let someone else ask the EFA why there are MSG’s & ASPARTAME’s in most to all AED’s we take, especially in the generic name drugs. You wonder why most drugs do not work, that can be why, but NOBODY holds the doctors & BIG PHARMA accountable & responsible for worse & future seizure cases as we get older, & taking drugs that do NOT help any of us, but makes it worse years later.


    Comment by James Davis — January 29, 2019 @ 7:14 PM

    • Well James, as far as support groups go, I suppose it’s the nature of the beast.

      I am a “reigning” member of the Epilepsy Foundation of Eastern Pennsylvania and they have done much to educate public personnel such as teachers, nurses, hospital workers, etc.

      And I find that laudable.

      I’m also a founder of their support group which is truly a comfort, source of information and gathering place for many who feel alone.

      Forget about the snacks and consider the acts!

      (We don’t serve anything except water, fruit and crudities.)

      Let’s agree to disagree on this one.


      Comment by Phylis Feiner Johnson — January 29, 2019 @ 8:39 PM

  3. Is there then nou support in South Africa?


    Comment by Leone — January 31, 2019 @ 4:10 AM

  4. Yesterday was National Epilepsy Day in Italy. It had been announced on tv news a few days earlier that the Bernini “baracaccia” sculpture-fountain of 1623 at the Spanish Steps in Rome would be lit up purple at night to celebrate the occasion. Today in the “Messaggiero”, a major daily newspaper, there was a photo of it as such. The main headline in big print mentioned some minor damage to the sculpture caused by drunken Russian tourists yesterday. In smaller print there was a simple statement about being lit up purple to commemorate “Epilessia” Day. Then a note to see page 36. I went there expecting to find an article on the subject of E.. Instead there was only a list and small photos of all of the damages done to the fountain in recent history by vandals , tourists, or drunken sports fans from outside Rome. Not one word about Epilepsy! Shame on that newspaper, Messaggiero! And the ignorant slobs who don’t have any idea what E. is, who make wrong connections!


    Comment by Andy — February 13, 2019 @ 12:14 PM

  5. Sigh. Not very encouraging. 😦


    Comment by Phylis Feiner Johnson — February 13, 2019 @ 1:31 PM

  6. I’m glad to see the group I run in NJ mentioned here. NJ is a large state with only 3 other epilepsy groups. Problem here in NIJ is that the groups are left up to volunteers to create. I couldn’t find a support group within an hour of me when my son was diagnosed. Thanks for sharing


    Comment by Michelle McArdle — March 12, 2019 @ 10:44 PM

    • I know I started my support group and then, happily the Epilepsy Foundation of Eastern PA jumped in.

      There’s another interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy.

      Friends and family members are also welcome.

      On the site, there’s an interactive map of Epilepsy Meet-Ups around the world.

      (And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/


      Comment by Phylis Feiner Johnson — March 13, 2019 @ 9:29 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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