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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.

Corporate Sponsors, Raffle Items and Volunteers Needed

Corporate Sponsorship

Once again we need sponsors to help make our tournament a smashing success!  Our sponsorship levels are as follows:

Platinum: $1500 Donation gives you a sign on our croquet court with your company’s logo, your logo on a banner which will be prominently placed at the tournament, your logo on the event website, large preferred logo on the tournament t-shirts, a foursome ($480 value), cocktail vouchers and our eternal gratitude.

Gold: $650 Donation gives you a sign on our croquet court, large preferred lettering on the tournament t-shirts, 2 spectator tickets and our sincerest gratitude.

Silver: $150 Donation puts your company name on the tournament t-shirts and our sincere gratitude.

In Kind Donations: We are grateful for any donations your business may want to offer of services, memberships, etc. and can often times apply your donation to one of the above sponsorship levels.

Croquet Day Volunteers:  Holding a fundraiser is a LOT of work.  We are always grateful for donations of time and talents as well!  We will once again need a photographer and a DJ.  If you know someone who would like to donate their talents or could offer their services for a reduced rate for a non-profit, we would be so grateful.  We also always need help the day of the tournament – let us know if you want to help!

Raffle Volunteers and Donations:

If you could spare a few moments and would like to help, please reach out to 2-3 local businesses asking for any donation they may be able to offer.  We will provide you with a letter explaining why we do what we do and our non-profit number for tax purposes.  If 10 people reach out to 3 businesses, we could have 30 items.  With 7 kids between us, Stephanie and I do a lot of running around, so we truly appreciate any items you may be able to secure and the effort you take to secure them!!!

Much of the money we have raised has been from raffles.  We have 3 categories of raffles.  Our high value silent auction items, such as a weekend in Martha’s Vineyard, high value raffle ticket items, such as a tour of Fenway Park with luxury seats for the game following and our standard raffles, which are usually themed baskets.  NO DONATION IS TOO SMALL.  Someone might donate a beach chair or a bottle of wine and someone else might donate a gift certificate to Barnes and Nobles and suddenly we have a perfect beach themed basket with a beach chair, a bottle of wine and a gift certificate for that beach read.  We will make ANYTHING you give into a wonderful prize and are actively seeking raffle donations of ANY size!  xoxoxo Colin and Beckett and all of our other Epilepsy Fighting friends

 

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

Croquet Hall of Fame Member – Bob Kroeger

Bob Kroeger runs our tournaments.  He is in the Croquet Hall of Fame.

Robert “Bob” Kroeger

No one loves to teach croquet more than Bob Kroeger, no one. That is the reason he is so dedicated to the sport. That and the fact that he also loves to play the game.

BobKWY

Bob’s croquet heritage stems from the early forms of “gorilla” croquet, the nine-wicket variety played on long grass using a three pound 9 ounce blunderbuss of a mallet, a game replete with foot shots and golf shots much like the game that was originally played at the Westhampton Mallet Club in the formative years. The croquet epiphany for Bob came when he first viewed the manicured lawns of New York’s Central Park lawn bowling green and was introduced to six wicket American rules croquet in 1977. Bob and his good friend Duffy Hart would awaken at 6 a.m. every Sunday to take a three hour train commute from upstate Norwich, New York in order to play on these New York Croquet Club’s courts.

Bob was among the twenty-eight players to attend the USCA’s first National championships in New York City in 1977 and fondly recalls his first major win in 1978 against a very formidable and experienced Hall of Famer, Nelga Young. His dad, Bud Kroeger, came down in 1980 to witness his national participation. In 1983 Bob took fifth place with a then remarkable 26-5 win and a star was born.

His tournament history is glittered with successes. President of the Boston Croquet Club in 1980, Bob participated in virtually all of the New England Regional Championships winning six singles titles and four doubles titles. In 1987 Bob won the USCA International Rules Singles Championship proving his great versatility and in 1988 went on to win his first of two Palm Beach Croquet Club Invitational Championship Singles titles (the other in 1992.) These victories alongside numerous local and invitational titles earned Bob a position on the United States Team, which he represented with distinction from 1988 to 1993. Bob gained his first American Rules USCA National Championship title in 1993 when he won the doubles with another Hall of Famer, Jim Hughes.

From the very beginning, Bob has been an extremely avid student of the game. England’s John Solomon and G. Nigel Aspinall, both rated number one in the world, brought croquet technology and the knowledge of advanced shot making and play to America and much of this was passed on through Teddy Prentis to Bob. His authorship of How to Play the Perfect Game, co-starring role in four instructional videos, and his nationwide instructional tours have made Bob one of the most recognized individuals in the sport. He has been and is currently the Director of the USCA Instructional Schools, Chairman of the Referee and Instructor Training & Certification Committee, member of the U.S. Team Selection Committee, Rules Committee, Handicap Committee, and Nine Wicket Committee. All of which belie Bob’s tremendous involvement with the USCA.

Croquet notwithstanding, Bob will tell you that his greatest sucess in life is his marriage to Deborah. In 1990 Bob moved to Cambridge, Mass. They were married in 1991. Bob is a professional musician as well, specializing in jazz and chamber music. He is an accomplished player of oboe, English horn, flute, and alto flute and is also a successful recording engineer specializing in digital audio recording and editing.

They say that the key to finding happiness in life is to love your work and to love the people around you. If that is so, Bob Kroeger has found such happiness and perhaps the true beneficiaries of this are all of us.

Bob, welcome to the United States Croquet Hall of Fame.

Robert “Bob” Kroeger was inducted into the United States Croquet Hall of Fame in 1999.

RobertChilton

Pediatric Epilepsy

Until our children had Epilepsy, we didn’t know…  

epilepsy_awareness

 

  • 3 Million people in the United States have Epilepsy
  • Of those 3 million people, 33% have seizures that are uncontrolled
  • 50,000 people die annually from seizures. This means more people die annually from seizures than from breast cancer and from auto accidents
  • Epilepsy is more prevalent than Autism Spectrum Disorder, Cerebral Palsy, Multiple Sclerosis and Parkinson’s COMBINED.  

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

View Existing Registered Players

The following people have already joined a team to play in the croquet tournament.  Buy tickets today if you have not!

Paul Shinney
Probably Murph
Probably Batman
Probably Jake
Jared Burhoe
Laura Burhoe
Dan Murphy
Susan Murphy
Rich Lauria
Colleen Lauria
Larry Amirault
Patty Amirault
Rickie
Chris
Jessica Reed
Josh Reed
Melissa Ludwig
Mat Ludwig
Bud Cipullo
Bill Shields
Eric Morgan
Ed Shanley
Jessica Hambelton
Jon Hambelton
Trish
Joe Pepper-Foley
Brian Coppney
Todd Joyce
Sean Kelly
Jeff narbone
John Morris
Colleen Morris
Dan Joyce
Kate Joyce
Meghan Hartwell
Chris Hartwell
Hannah Mitchelson
Mark Mitchelson
John Moschella
Mike Moschella
Tom O’Keefe
Phil Lynch
Peter Degnan
Pat Daley
Nick Lyons
Nathaniel Powell
Kevin Williams
Maureen Williams
Joe Higgins
Kerrianne Higghind
Kathy Moschella
Jan O’Keefe
Barbara Haas
Robbie Lynch
Brian
Dad
Dawn
Guest
Colleen Jordan
Rob
Brian W Humberd
James Shea
Abby Eldridge
Dave Eldridge
Doug Wellman
Marji Wellman
Michael Tobin
Kathy Tobin
Juliet Schiff
Jeff Pelletier
Katie M Steele
Bridget Galvin
Erin O’Brien
Kristina Ware
Frank Judd
Jill Judd
Bob Buckley
Kerri Buckley
Andrea Butler
Ted Buckley
Robert Buckley
Patricia Buckley
Katie Kemp
John Kemp
Maegan Tibbet
Jamie

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