Dr. Jong Woo Lee, an epilepsy neurologist at the Brigham and Women’s Hospital and a member of the our Professional Advisory Board, is running the Boston Marathon for the Foundation today!  Good luck! Learn more, or give, here.

We are pleased to announce that we have been awarded two Commonwealth Corps Service Members to expand our Young Leaders Network in Lowell, Springfield, Worcester, and Boston in the coming year. We are actively recruiting service members to join us for a year of service. Learn more here.

Our Walks and Runs are a great way to show your epilepsy pride, build community, and give back as we work together to #makeepilepsyhistory. Here's a top Boston team's story: Our son Jordan is now age 40 and was diagnosed with epilepsy 34 years ago. He typically has a few seizures every day, some days more than others. Some seizures are momentary and others are more severe, causing him to fall down or hurt himself in other ways. He had an aide during his school years because often he couldn't pay attention in class when he was having a seizure or recovering from a seizure. After many years he did manage to graduate from Bunker Hill Community College. He has had several internships but he has been unsuccessful finding an employer who will take a chance hiring an employee who has seizures. He lives in a small apartment in Somerville, MA.  THIS IS EPILEPSY: While visiting with us a few weeks ago Jordan had a seizure while sitting on the sofa with a cup of hot tea. He spilled the tea in his lap and suffered first degree burns on the insides of his thighs and his right hand. The burns blistered. A week later Jordan was dealing with the scabs and had difficulty using his hand. Read more here.

Please join us on Boston Common, May 18 (Special pricing ends April 18!), or May the 4th be with YOU in Springfield MA, or get out your running shoes for Matty's 5K, June 15, North Kingstown, RI. 

Katie Kavka is a 9 year old 3rd grader from Andover. She was diagnosed with epilepsy at age 7. "She never let the diagnosis stop her: she loves playing hockey, soccer, softball, and acting," said her mother Karen. "Through perseverance she shows us all that we should not let anything stand in the way of what you want to do," said Susan Linn, President/CEO. "Her school and the community have been wonderfully supportive," said Karen Kavka.

Katie wants to help other kids like her have access to Epilepsy Foundation New England's Purple Camps. The Foundation's 15 camps give kids with epilepsy the chance to make friends, have fun, and build their confidence. Katie participated in last summer's Purple Camp at Ironstone Farm. Fifteen kids rode horses, learned horsemanship skills, and even vaulted by the end of the week. Katie said, "It was amazing to be able to stand on a horse, and I loved meeting other kids who understand epilepsy. I made so many friends! I can't wait to go back this year." The camp's therapeutic horseback riding is staffed with dozens of volunteers who act as sidewalkers to ensure participants are safe in the event of a seizure. A nurse is present and helps provide seizure first aid.

Last month, Katie told her parents, "I want to give back." She decided to host a clothing and ketogenic food drive to raise funds to support the camp programs and people living with epilepsy for the month of April.  Read her full story by clicking on the image of Katie, above. We're so grateful for and proud of you, Katie!

Our President/CEO, Susan Linn, has started a column to share her thoughts on living with epilepsy as a caregiver. Read her fifth post here: 

The Tight Rope
“I just love the children, and I want to spend time with them,” Chanda said the other day as she was reflecting on her inability to do all the things with our children that she enjoys. Exhaustion, stomach upset, and more, are currently limiting her ability to be present. It’s unfair and sad.  Epilepsy is a thief, robbing the person with epilepsy of “normal” joys, and epilepsy is a thief, robbing their family of the stability and joy that we all wish to share.



Chanda works hard to create special moments and projects with the children. I work to keep the family moving and healthy - (happily) taking on a disproportionate amount of the chores, while trying not to make Chanda feel “irrelevant.” I work to ensure the kids know how she is doing, without knowing too much, and that we work together to support our family’s strengths and make space for the children’s difficult questions and complex emotions. It’s a balancing act.

It’s not always like this - not usually, and we pray that Chanda will be back to her strong, vibrant self soon. In the meantime, neighbors and friends help with rides, child care, and more. We’re on a tight rope, and a little too far to the left or right can cause us to topple. Luckily, our safety net catches us. It’s tempting to skip the kids’ swim or hockey or scouts or musicals etc., but we keep going to keep them healthy and strong too. And when we’re late or not entirely prepared, it’s so comforting when people understand or support us. We’re so grateful for the balance our community helps us find until we're safely back on solid ground. 

Last week, our team received a training on PNES from Drs. Dworetzky and Gaston, Brigham and Women's Hospital.  Here is some of what we learned: 

• Psychogenic nonepileptic seizures (PNES) are sudden, involuntary and usually short changes in behavior, movement, sensation and/or consciousness, that represent a reflex-like response to physical and/or emotional distress that the brain is detecting = PSYCHOGENIC
• PNES are not accompanied by  electroencephalographic (EEG) changes that occur with an epileptic seizure = NONEPILEPTIC
• PNES can closely look and feel just like an epileptic seizure = SEIZURE

• 1 out of 3-4 patients admitted to an Epilepsy Monitoring Unit have PNES.
• 1 out of 8-10 patients seen in Epilepsy Specialty Clinics have PNES.
• They can occur at any age (rare before age 5).
• More frequent in women than men (about 3:1).
• It takes an average of 7 years to make the correct diagnosis.
• Many patients can become disabled by PNES.
 •About 10-20% patients with PNES also have a history of epilepsy.

Here is an important resource for more information: www.nonepilepticseizures.com

Clients affected by PNES are a vibrant part of our community:  Thank you Drs. Dworetzky and Gaston for deepening our learning to better serve our clients. 

Our First Prom will be on June 12, 2019 at the Bull Run in Shirley MA. Plated dinner followed by dancing. Who: Anybody Who Wants to Promenade, from High School to College and Beyond. Cost: $0.00, Thanks to our generous donors. Register Here. 
Thanks to our volunteer photographer, Chuck Losey!

ALL SHARE GROUPS HERE 

Springfield MA Walk for Epilepsy, May 4, 2019: May the 4th Be With You!

Boston Walk for Epilepsy, May 18, 2019

Battle of the BioTech Bands, May 30, 2019 6P, Boston

NH Family Education Conference at DHMC, June 1

Golf Tournament, Fall River MA June 3, 2019

Prom, Shirley MA, June 12, 2019

Matty's 5K, No Kingstown RI, June 15, 2019 

REGISTRATION NOW OPEN: 2nd Annual Slap Out Epilepsy Hockey Clinic, Andover MA, June 22, 2019

Joseph's Hope Scholarship Benefit Concert, Shirley MA June 23, 2019

MUST PURCHASE BY April 30: Red Sox with MGH PEARS and Epilepsy Foundation NE: June 24, 2019 7P

Check Out Our Full List of Purple Camps

36th Annual Boston Gala Save the Date: We are thrilled to announce that this year's gala will be held November 1, 2019, InterContinental Boston, honoring Dr. Cathy Phillips, featuring author Kurt Eichenwald. 

ALL EVENT LISTING HERE