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Community Fundraisers Support Pediatric Epilepsy

Two Massachusetts families whose young sons have epilepsy have turned the helplessness and hopelessness they once felt into fundraising for the Pediatric Epilepsy Program at the MassGeneral Hospital for Children.

They do so out of gratitude to their sons’ neurologist, Elizabeth Thiele, MD, PhD, director of the Pediatric Epilepsy Program. Julie Joyce and Stephanie Moschella, through their nonprofit, PEARS (Pediatric Epilepsy Awareness Research Support), have helped Dr. Thiele expand wellness care and research benefiting children with epilepsy and their families.

About 470,000 children in the United States have epilepsy, in which electrical activity in the brain is disrupted.

From Darkness to Light

Six years ago, Julie and Kevin Joyce’s two-year-old son Colin was having 30 seizures a day — despite trying six medications to control them — when they brought him to Dr. Thiele in desperation. “We were terrified,” Julie recalls.

PEARS presents a yearly donation to the Pediatric Epilepsy Program at Fenway Park. From left: Heidi Pfeifer, RN, LDN, Colin Joyce, Beckett Moschella and Elizabeth Thiele MD, PhD.
PEARS presents a yearly donation to the Pediatric Epilepsy Program at Fenway Park. From left: Heidi Pfeifer, RN, LDN, Colin Joyce, Beckett Moschella and Elizabeth Thiele MD, PhD.

One month later, Colin was seizure free — and still is. “We went from the darkest of dark to the lightest of light,” Julie says. “Dr. Thiele saved his life. How could we not do something for her in return?”

Around the same time, Stephanie and Chris Moschella started a similar ordeal with their son, Beckett, now age 9. And although Beckett is not seizure free, since Dr. Thiele began treating him seven years ago, his seizures have been milder and much less frequent.

Passion and Patience

“To say we were fortunate to find Dr. Thiele is an understatement,” Stephanie says. “She’s the best. She’s passionate about her work and patiently takes time with us.”

Dr. Thiele is widely known for a “low glycemic index” diet therapy that she and Mass General dietitian Heidi Pfeifer, RD, LDN, developed about 16 years ago. It’s for the 30 percent of children with epilepsy that can’t be controlled by existing antiepileptic medications.

About one-third of the children on this high fat, low carbohydrate diet become seizure free. They can eventually stop medications and the diet. Another third on the diet have only half the seizures they used to have.

Creating Community

Julie and Stephanie met at a Halloween event for families of Dr. Thiele’s patients on dietary therapy. They immediately hit it off. “I have a wonderful group of friends but no one else understands what I went through like Stephanie does,” Julie says. “I’m not alone and that feels good.”

Social networking with other families living with epilepsy is a central part of their fundraising activities.

“We’re like one big family helping children with seizures.” —Elizabeth Thiele, MD, PhD

They’ll be doing their fifth Croquet for a Cure fundraiser on Sept. 8, 2018. The past four years they’ve also sponsored an epilepsy awareness event at a Boston Red Sox game. This year’s is July 12. Each attendee gets a purple “Epilepsy Sox” tee shirt. Purple is the international color for epilepsy awareness.

PEARS donations support a wellness program for patients and their families called Thrive. It includes virtual support groups and a new life skills class called Doggonit: Epilepsy is Ruff, where teenagers with epilepsy work with professional dog trainers to help train rescue dogs.

Their funds also help support research into dietary therapy. With more than 30 different epilepsy syndromes, Dr. Thiele and her colleagues are trying to determine for whom the diet is most effective.

“We’ve found that it is so effective in treating Doose syndrome, a childhood epilepsy syndrome that’s very hard to control, that we now recommend the diet as a first treatment before medications,” says Dr. Thiele. It’s also possible that the diet could prevent some forms of epilepsy from developing.

PEARS' epilepsy awareness day at Fenway Park.
PEARS’ epilepsy awareness day at Fenway Park.

Purple Power

Dr. Thiele and Pediatric Epilepsy Program staff typically attend both PEARS events. “We receive the check from PEARS on the field at Fenway Park, which is really fun,” Dr. Thiele says. “It’s powerful to be surrounded by people wearing purple. We’re like one big family helping children with seizures.”

Mass General has an active community fundraising program called BeCause to support people like Julie and Stephanie, who are inspired to take action to benefit the hospital’s world-class patient care and research.

“Here we are two moms who have raised more than $100,000 for epilepsy research and awareness,” Stephanie says. “We hope others are inspired to do something too.”

With seven children between them — Stephanie has three children and Julie has four boys, all under age 10 — they have their hands full.

It’s hard work, Julie admits. “But there is nothing like standing in the bleachers at Fenway Park and seeing 500 people wearing purple shirts, knowing that we’ve made even a small difference.”

To support the research of Dr. Thiele, please contact us.

For more information about community fundraising for Mass General, please visit our BeCause website.

SUDEP

You’ve heard of SIDS, but you likely haven’t heard of SUDEP which is a Sudden Unexpected Death in Epilepsy for someone who is otherwise healthy.  It is a very scary and real complication and is the leading cause of death in a person living with Epilepsy.  CURE Epilepsy, who is a primary beneficiary of our Croquet for a Cure fundraiser every year, is the leading private funder of research for SUDEP.  https://www.cureepilepsy.org/research/sudep.asp  While no device is claims to fully prevent SUDEP, some believe that use of alert devices may help to lower the risk at least in allowing intervention in the case of a seizure during sleep.  Some of these devices include :

Emfit Monitor https://www.emfit.com/sleep-monitor-for-detecting-muscle-spasms/

SAMI Monitor https://www.samialert.com/

SmartWatch https://smart-monitor.com/

Portable Pulse Oximeter – a non-invasive device that detects pulse and oxygen levels while sleeping

PEARS

PEARS_side leaf

PEARS – formerly known as Paying it Forward for Purple, stands for Pediatric Epilepsy Awareness Research Support.

We are proud to be a 501(c)3 non-profit whose mission is just as the name implies, to raise awareness, to raise funds for research and to reach out and support families who are dealing with the often times devastating effects of Epilepsy.  Every year, we hold our large scale fundraiser, our Croquet for a Cure tournament, which is not only tons of fun, it helps us fund small projects at MGH Pediatric Epilepsy Clinic as well as donate funds to CURE Epilepsy, the leading research funding organization for Epilepsy.  Additionally, we now have 100 families in our mostly “virtual” online support network as well.  We are also holding our 3rd annual Family Day at Fenway Park which we are thrilled to say is an “Official Pediatric Epilepsy Awareness Day” this year.  With your help, we can expand our funding opportunities to other local hospitals as well as research initiatives for unconventional treatments for Epilepsy.  We are grateful for the help of our friends and family who have supported our dream of making a difference in the lives of children who are suffering every day.  We love you all!  Julie and Stephanie, co-founders of PEARS

Epilepsy Awareness Day at Fenway Park 9/27/15

We had an amazing day at Fenway Park surrounded by 200 family members, close friends and members of our Pediatric Epilepsy Support Network.  Awareness is a huge part of our mission and I think we made quite the statement in our purple shirts at Fenway Park.  Once again, we were humbled by the support of all who helped make this such a special day!  IMG_4605

PEARS

We are excited to announce that we are officially a non-profit!  We are transitioning from Paying it Forward for Purple, to PEARS (Pediatric Epilepsy Awareness Research Support).  Our goals are the same, but being a non-profit gives us the ability to reach out to large corporations that only give to non-profit organizations, but it also gives us some flexibility in where the money we raise goes.  We will always give to Mass General, but we will also have the opportunity to research and help fund other worthy organizations, ones whose goal is to find a cure for Epilepsy.  We will always be very transparent about where the money that we raise goes and it will always go to Pediatric Epilepsy, to raise awareness, for research and to support the many families whose lives are negatively impacted by Epilepsy.  Thank you for helping us!  XOXO

The Joyce’s and The Moschella’s