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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

Please go and
enjoy your life.
Danny Did.

Danny Did Ambassadors

Danny Did Ambassadors Program

Danny Did Ambassadors are extraordinary volunteers who choose to serve the Danny Did Foundation at elevated levels of engagement and responsibility. Each Ambassador shares their personal story to further Danny Did Foundation’s mission to prevent deaths caused by seizures. With the support and backing of Danny Did, ambassadors work independently and proactively as official representatives of the foundation to help Danny Did integrate into networks and communities across the United States. The main goals of each Ambassador are: promoting the Danny Did Foundation and its mission to prevent deaths caused by seizures; advancing awareness of epilepsy and of Sudden Unexplained Death in Epilepsy (SUDEP); fundraising for Danny Did Foundation; and initiating contact with medical professionals, schools, corporations and advocacy organizations interested in an association with Danny Did Foundation. For information on this program, email Tom Stanton at tfstanton@dannydid.org. Click here to meet our Kids’ Ambassador, Danny’s sister Mary Grace!

With gratitude we introduce our Danny Did Ambassadors:

Nugents

Tom and Mary Nugent
Northern Illinois
marynugent@comcast.net
Tom and Mary Nugent have three sons, Jack, Will and Quinn. The younger of their two boys have epilepsy. The Nugents represent the Danny Did Foundation at numerous conferences and meetings throughout the Chicago area and serve as mentors to many parents who care for multiple children with epilepsy. Tom Nugent is also an alumni of Team Danny Did.

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Allison Austin
Northern Virginia
ali.r.austin@gmail.com
Allison is the mother of two young boys and lost her husband Jeff to SUDEP on February 26, 2012. Jeff died from SUDEP after experiencing only his second known seizure, at the age of 42, and his family was never informed that seizures could be fatal. Allison now advocates in her husband’s name through fundraising events and media awareness around SUDEP. Her efforts have helped numerous families in her community.

MistyStephenPhillips

Misty and Stephen Phillips
North Carolina
mistyl1976@gmail.com
Misty Phillips became an epilepsy advocate after her son Lucas began having seizures on Christmas Eve 2009 at age 11. An avid runner, Misty and her husband Stephen ran the 2012 Chicago Marathon as part of Team Danny Did. The North Carolina couple are also running several local races to raise awareness and work to grow Team Danny in their home state.

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Sherri & Brad Newman
Washington, D.C.
bradbelly@gmail.com
Sherri and her husband Brad lost their 12 year-old son Joshua to SUDEP in November 2010. Following the suggestion of their daughters, they registered Team “Joshua’s Smile” in the 2011, 2012 and 2013 National Walk for Epilepsy. Though they had originally planned to walk as a family of five, following Joshua’s unexpected death, their team grew to 160 friends and family who raised over $18,000. As a new tradition, each November they host the Joshua A. Newman Memorial 5K Run/Walk  to advance epilepsy awareness and to support the Danny Did Foundation in purchasing seizure detection devices for families unable to afford them.

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Michelle Filips
Western Michigan
shelly.filips@gmail.com
Michelle Filips lost her daughter Jessica at age 19 to a seizure on February 4, 2014. Her husband and her son both cope with the challenges of seizures. As a parent advocate, Michelle is working to improve doctor education and communication in Western Michigan around the risk of death in epilepsy. She also works to enable monitoring devices for families facing epilepsy in Michigan.

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Mylissa and Jeff Daniels
West Virginia
deedallas@comcast.net
Mylissa and her husband Jeff lost their 5 year-old son Dallas to SUDEP in January 2011. They have held several fund raisers to benefit Danny Did, including a 5K walk and a T-shirt sale. Mylissa has spoken before the Institute of Medicine to represent both her personal experience and our shared cause.

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Scott and Lana Frey
Indiana
drscottfrey@yahoo.com
Scott and his wife Lana have an 11-year-old daughter who faces the challenges of both Cerebral Palsy and Epilepsy, and a younger daughter. A dentist, Scott utilizes his professional networks to raise awareness and funds for our cause. The Freys also serve as our liaisons to the Indiana Chapter of the Epilepsy Foundation.

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Kari and Dennis Knapp
Twin Cities, Minnesota
3leggedchair@comcast.net
Kari and her husband Dennis lost their 22-year-old son Jake to SUDEP in March 2009. They serve as our liaison to the Minnesota Chapter of the Epilepsy Foundation. Each summer the Knapp family hosts a Socks & Sandals Golf Outing fund raiser, aptly named because Jake always wore socks with his sandals. Portions of the proceeds are used to purchase seizure detection devices for families who cannot afford them.

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Stefanie and Marc Mingle
South Florida
stefanie.mingel@gmail.com
Stefanie and Marc lost their daughter Emmy to SUDEP in July 2013, a few months before her second birthday. These brave parents now advocate for epilepsy and SUDEP awareness in Emmy’s honor, and work to advance understanding of seizures in their South Florida community.

cindy-mitchell

Cindy Mitchell & Family
Southern California
DDF.CindyMitchell@gmail.com
Cindy and her husband Tom have a son Robert who has epilepsy. Their Seizure Response/Assistance Dog is a big part of the family, his name is Boomer. The Mitchells have represented Danny Did at several epilepsy conferences, meetings and expos in California, and serve as our liaisons to the Los Angeles Chapter of the Epilepsy Foundation.

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Kendal and Andrew O’Lenick
Atlanta, Georgia
kaduresky@yahoo.com
Kendal and her husband Andrew have two sons, Conner and his younger brother Asher, who have epilepsy. Their Vizsla dog Abby helps to monitor their seizure activity. A personal trainer, Kendal is helping to bring participation and fundraising for Team Danny Did to the Atlanta area. She herself began having seizures in late 2014. Says Kendal, “As a mom, not a day goes by that I don’t worry about SUDEP. I want other parents to have an outlet and know that we are not alone with our battle against epilepsy!” In 2013, they shared their story with more than 1,000 college students as part of the Northwestern University Dance Marathon (www.nudm.org).

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Rachael Reyna
Lemont, Illinois
In 2012, Rachael Reyna lost her daughter Ava, who died in as a result of her epilepsy, and her husband Carlos, to cancer. In their loving memory, Rachael now hosts the “FOREver Loved” Golf Outing each August. The day begins with a cookout lunch, followed by 18 holes of golf, culminating with dinner and awards. Proceeds benefit the Danny Did Foundation and the Carcinoid Cancer Awareness Network. Befitting her new role as a powerhouse advocate. In just two years, she has raised more than $45,000 for Danny Did.

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Julie and John Bezold
Jackson, Tennessee
juliebezold@yahoo.com 

Julie and John Bezold are parent advocates who represent Danny Did in Tennessee. Their son Nick is a talented 16 year-old who is a star on his high school soccer team. Nick also has epilepsy. For the past three years, the Bezolds have hosted The Purple Way 5K run in their hometown of Jackson, TN. The work they do to bring together their community over epilepsy awareness is inspiring.

abrams-family

Amber Abrams
Greater Philadelphia
rlnm1420@verizon.net
Amber had seizures as a child and epilepsy runs deep in her family. Her daughter Rachel, 18, has faced seizures since age 4. Amber lost her son Nathan at age 13 to SUDEP on December 26, 2012. Since losing Nathan, Amber has made it a personal mission to let as many people know about epilepsy and SUDEP as she can. As a DDF Ambassador, she hosts awareness and fundraisers events, which inspire and mobilize her networks in the Greater Philadelphia area.

langford-family

Bryan and Natalie Langford
Idaho
bryanlangford@outlook.com
The Langfords have four children. Their oldest, Conner, passed away from SUDEP at age 8 on May 6, 2011. He suffered from Lennox-Gastaut Syndrome, a severe form of epilepsy. After his death, this young family had a new struggle to face each day. In addition to their efforts advocating through epilepsy groups and social media, Bryan will race in the 2016 Coeur d'Alene, Idaho, Ironman for Team Danny Did in memory of little Conner and everyone else affected by epilepsy and SUDEP.

ChelseyLoeb_Parents

Chelsey Loeb
New York City
chelseyloeb@gmail.com
Chelsey began having seizures at age 15, and despite high doses of medication, the seizures continued almost daily. 11 years later, as a teacher of young minds, it was time to conquer the epilepsy holding her back. After switching to the epilepsy team at NYU Medical Center, she decided that brain surgery was the best route to accomplish her goals. Some surgeries brought failures, yet the failures brought strength. Support and the drive for success enabled a new seizure free life for Chelsey. Facing repeated adversity has made her stronger, and she is now ready to pay it forward.

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Wendy Miller
Southern Indiana
wrtruebl@iu.edu
Wendy is an endurance athlete and has been living with epilepsy most of her adult life. She is an Assistant Professor of nursing at the Indiana University School of Nursing, where she has a program of research focused on improving quality of life and access to care for people with epilepsy, as well as reducing stigma and preventing SUDEP. She is married to Tim, and has two children, Rowan (age 5) and Amelia (age 13). Her whole family is involved in increasing epilepsy and SUDEP awareness.

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Sasha Pina
Las Vegas, Nevada
sasha.pina@live.com
In 2011, Sasha was diagnosed with epilepsy at the age of 17, one year after suffering a head injury. From that point on, she made it her mission to spread awareness of epilepsy in everything she does. Self professed as having no fear, she races BMX bikes and is a member of the Athletes vs. Epilepsy program of the Epilepsy Foundation of America. In January of 2016, Sasha race in the BMX Nationals event for Team Danny Did to represent herself, Danny Stanton and all those with epilepsy.

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Sylvia Palm
Maryland

palmsc112@verizon.net
Sylvia Palm is a trained Systems Engineering aerospace professional and was enjoying a successful career when her life changed dramatically. Violent seizures placed her into a coma in 2013, instigating a battle with epilepsy that was completely foreign to her. She has worked at leading aerospace companies including General Electric Aerospace, Lockheed Martin and BAE Systems, and has taught part-time at the University of Maryland, University College and Johns Hopkins University Carey School of Business. In semi-retirement she continues her academic relationship at Salisbury University, where she engages her students to learn more about epilepsy and seizures.

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Please go and enjoy your life.
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