JUNE / JULY 2016
A MESSAGE FROM THE DIRECTOR
 
Dear Matty Fund Families, 

Kate Spinella
Thank you all who came this past weekend to partake in the festivities of the 14 th Annual Matty Fund 5K Run/Walk for Epilepsy. Because of your generosity and participation, we raised over $27,000 to support the programs at The Matty Fund! We would like to thank the families who raised a record amount of support in donations including the Dos Santos Family of Team Nina, the McGraw Family of Team Alyssa Rose, the Vincent Family for Team Leah, the Montanaro Family of Team Soph, and the Broccoli Family of Team Angela. On behalf of our board, staff and Matty Fund families, we are so grateful!

John O'Hurley
The biggest news of the summer is the arrival of John O'Hurley of Seinfeld and the National Dog Show fame, who will be performing his one-man show at the Jane Pickens Theater in Newport on Wednesday, July 13. With A Man with Standards , he will bring his unique style, voice and musings to Rhode Island for one night only to benefit The Matty Fund f or Epilepsy. Mr. O'Hurley, an advocate for epilepsy awareness, lost his sister to epilepsy when he was a teenager. We are so excited to spend time with him behind the piano, and delighted for his gracious desire to help The Matty Fund. Tickets can be purchased by clicking here.
 
I was reminded very recently how devious epilepsy can be when a friend's son suffered a seizure after some years without any. Sometimes you believe you have defeated it, and then it sneaks back in, completely uninvited. And then, sometimes we see the other side, as we spotlight these two young women who graduated in May, including my own daughter, and we feel like we defeated epilepsy one more time!

Stay strong and healthy, we hope to see you at one of our events or at Camp Matty!

Happy Summer!


Kate Spinella
Executive Director

THE MATTY FUND'S 14th ANNUAL 5K FOR EPILEPSY
 

 Runaway
 Success
"Emily doesn't let epilepsy get her down"

The Matty Fund hosted its 14 th Annual Matty's Memorial 5K Run/Walk for Epilepsy and Family Fun Day on Saturday, May 28, at Quonset Point. The popular event, which is held in memory of Matthew Siravo, who passed away in 2003 following a prolonged seizure at the age of five, raised over $27,000.00 to provide resources, promote patient safety, and improve the quality of life for children and families living with epilepsy.
 
More than 450 enthusiastic participants braved the blazing sun and unseasonably hot temperature, which rose to a high of 86 degrees. Nevertheless, complaints were few as avid and amateur runners rallied in support of a cause dear to so many of our hearts. Children who took part seemed to take no notice of the heat as they joined in on the family fun in the Kids Zone, with arts and crafts and carnival games, and a record 54 of them sprinted heedlessly through Matty's Mighty Dash, a short race designed just for the kids.

Debra Siravo and Bronson Venable 
(t op male winner) 

Bronson Venable of Wyoming, RI, who wore bib number 359, was the top male winner of the 5K, which he completed in a remarkable 16 minutes and 12 seconds. Karla O'Neil of North Kingstown, RI, wearing bib number 399, was the top female racer at just 18 minutes and 2 seconds. 

Karla O'Neil 
(top female winner)

Almost all of the participants rose to the challenge of completing the course and are to be heartily congratulated. For the overall finish list click here . For finish line photos click here

Runners and walkers alike, along with volunteers and spectators, were happy to celebrate the completion of an event that can only be described as a runaway success at Fat Belly's Pub in North Kingstown, where refreshments and libations were served while attendees were entertained by the musical stylings of Coventry's own The Rhythm Section.

Click here to enjoy photos of this very special day  - courtesy of Don Farias Photography. 
JOHN O'HURLEY: MAN ON A MISSION FOR EPILEPSY AWARENESS

Actor Recalls His Beloved Sister
John O'Hurley
Perhaps best known for his performance as   J. Peterman on Seinfeld, and celebrated as a multi-talented star of stage and screen, John O'Hurley is also one among the many of us whose lives have been touched by epilepsy. His 17-year-old sister Carol passed away from epilepsy following a seizure when he was 16, and he has been an honorary board member and spokesperson for The Matty Fund for Epilepsy since 2015, promoting epilepsy awareness and appearing on behalf of The Matty Fund throughout the state.
 
In 2013, O'Hurley told Neurology Now that the loss of his sister, with whom he was "extraordinarily close," is "something that has always stayed with me." He went on to relate:  "As I've grown in my entertainment career, I have always felt that if I could lend a voice to educating others about epilepsy, I would." 

A young John O'Hurley (left) 
with his sister Carol (middle)

His efforts have included not only his work with The Matty Fund, but participation in a patient education video with the American Academy of Neurology and the American Brain Foundation, and partnership on a variety of projects with the American Epilepsy Society.
 
Don't miss your chance to join The Matty Fund for Epilepsy for an evening of music and musings with John O'Hurley at the Jane Pickens Theater in Newport, RI on Wednesday, July 13, 2016. If you wish to be among those treating themselves to a memorable evening of musical favorites and stories described by the Palm Beach (Florida) Daily News as "hilarious," go without delay to
www.mattyfund.org for more information and to confirm your seat, or call  401-921-4466.
MEET LEAH
AND FRANCESCA
Women with a Bright Future


We would like to introduce you to two of our young Matty Fund  women who graduated from college this spring.


Leah Kossak, from Portsmouth, RI, was diagnosed with epilepsy in the summer of 2011 at the age of 16. She received the Matty Fund Scholarship in spring 2012, and went on to attend Simmons College in Boston. While there, Leah studied public relations and marketing communications, and volunteered at Strong Women, Strong Girls. She also worked at a variety of internships, most recently at Harvard Medical School. Leah has been hired as a digital communications specialist at Boston Medical Center. She will make her home in Boston.


Francesca Spinella, also from Portsmouth, was diagnosed in the summer of 2013 after her freshman year in college. Francesca attended the University of Connecticut in Storrs as a communications major. For the last two years, she has worked as a student employee at the Center for Students with Disabilities at the University. The day after graduation, the Center offered Francesca a job as an assistant accommodations coordinator. She will live in Manchester, CT.

Congratulations Leah and Francesca; we are so proud of 
you both!

UPCOMING EVENTS

JOHN O'HURLEY  

Wednesday, July 13, 2016 
6:30 pm - 10:00 pm

Jane Pickens Theater
49 Touro Street
Newport, RI


For more information and tickets CLICK HERE


SUMMER 
CAMP MATTY 


August 1 - August 4, 2016

Greenlock Therapeutic
Riding Center
59 Summer Street,
Rehoboth, MA 

Click here  for more information or call Christina Coffey at 401.921.4466, Ext. 10 .

Applications will soon be available at www.MattyFund.org

A special thanks to the We Promise Foundation for helping to make Camp Matty possible!


MORE EVENTS

With the impending start of summer, we still have a few more activities for our families to close out a fabulous
school year.



Please join us for a variety of fun events!
  • The Matty Fund Open House at our new offices on June 23
  • If you feel like dancing, please attend the Summer Celebration Benefit on June 18 at Bonnet Shores. A portion of the proceeds from the Brass Attack Concert will benefit Camp Matty!
For information on all of our events
  Click here  

The Matty Fund's mission is to provide family resources, raise epilepsy awareness, promote patient safety, and improve the quality of life for children and families living with epilepsy.



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