For several years, I had been hoping to have a conference on psychogenic seizures but when I had brought this up, I was met with doubts. It was thought that there might not be enough interest in the topic of PNES and it was predicted that we might end up standing alone in an empty conference room. Despite these concerns, last year, we decided to go ahead and hold our first annual conference on PNES in New Jersey.
On the day of the conference, although we had received over 100 registrations and were well prepared with lectures, educational materials, purple and teal charms, and had ordered breakfast and lunch, we really didn’t know what would happen. We hoped to properly highlight PNES and those who live with it, educate, and provide a space for patients to speak up and come together as a community, but we couldn’t have imagined just how extraordinary the event turned out to be. The audience came from Maine, Iowa, Washington, DC, Kansas, the Netherlands, and of course New York, New Jersey, and Connecticut. Those in attendance learned about novel topics and actively participated with the speakers through questions and comments. At the end of the day, professionals, caretakers and patients met to discuss some of the biggest challenges patients and their families face. A grassroots community was consolidated at that time. An immediate outgrowth was the #saynotopseudo and PIES for PNES YouTube campaign started by the Cooper’s. A couple of those present later joined the board of Epilepsy Free and helped design a PNES awareness T-shirt and organize this year’s meeting. In addition, an online network blossomed and now provides important support to PNES caretakers as well as PNES sufferers of different ages.
This year, we will be holding our Second Annual PNES conference on October 3, 2015. Registration is free and open. We are delighted to be joined by invited speaker, Dr. Gaston Baslet of Boston’s Brigham and Women’s Hospital who will be speaking about Treatments for PNES: Evidence based and new frontiers. PNES advocates, Amber and Spencer Cooper, Lee Paolella (graphic designer for PNES awareness), Nadine Boesten (PNES blogger), and the Nelsons also plan to be with us sharing their insights. Although registration just opened, we have already received registrations from Washington State, Oklahoma and Florida to mention a few and have also received registrations from as far as Russia and England. To register: http://epilepsygroup.com/register_events.php?idseccion=6&idsubseccion=20&event_name=Annual Northeast Regional Epilepsy Group Conference&event_location=Mahwah, NJ&event_date=2015-10-03
If PNES has touched your life in some way, I invite you to come to the conference and become part of this growing community. Knowledge and union are Power. I am including the full program details below:
October 3, 2015 Second annual conference on psychogenic non epileptic seizures
Time: 9AM-4PM Cost: free Where: Sheraton Mahwah Hotel 1 International Blvd Mahwah, NJ 07495
Audience: patients, caretakers and professionals who work with them Breakfast and lunch included PROGRAM: 8-9: Registration and breakfast 9-9:15 Welcome and Program Introduction –Lorna Myers, Ph.D.
9:15-10 Introduction to Psychogenic non-epileptic Seizures (PNES) –Lorna Myers, Ph.D.
10-10:45 How are psychogenic seizures diagnosed- Christos Lambrakis, M.D.
11-11:45 Treatments for PNES: evidence-based and new frontiers–Gaston Baslet, M.D.
11:45-12:30 Trauma and PNES: Treating PTSD with exposure therapy-Lorna Myers, Ph.D.
1:30-2:15 A growing PNES movement-we have invited PNES advocates and community members Amber Cooper (Founder of PNES Awareness), Lee Paolella (Graphic design to raise awareness), Nadine Boesten (PNES advocate from the Netherlands), and Eric L. Nelson (PNES advocate) and Millie Nelson (PNES caretaker)
2:30-3:15 Maintaining your quality of life while living with PNES-Lorna Myers, Ph.D.
3:15-4 Caring for the Caretaker and local available resources-Urmi Vaidya, LCSW
4-5 Informal round table gathering for audience members who wish to stay behind and continue networking