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WebMD Health Heros & Epilepsy Support
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Haylen_WebMD_Staff posted:
Each year, WebMD's Health Heroes are announced in the pages of the November/December issue of WebMD the Magazine.

One of this year's honorees lost a son to an epileptic seizure and have set up "The Matty Fund ", providing information and resources to other families dealing with epilepsy. An excerpt from the feature and link to information about all of the 2012 Heros below.

Richard and Debra Siravo's 5-year-old year-old son, Matty, died after a prolonged epileptic seizure in 1998. Rather than succumb to grief or anger, Debra, a schoolteacher, and Richard, who owned an insurance adjuster business, decided to help others. Starting in their basement in Wakefield, R.I., they set up "We couldn't return to our jobs or daily routine," Richard says. "No one was assisting Rhode Island families dealing with epilepsy at the time." Adds Debra, 49, "We wanted to take something horrific and turn it into something positive."

Read more here: Meet our 2012 WebMD Health Heroes

Haylen
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saxofone1 responded:
Hi Haylen,

There is another hero out there that many of us have never heard of.

His name is Jerry Kill. He is the head coach for the University of Minnesota. He had a seizure in the team's locker room as well as one on the sideline. Unfortunately, some are now calling him a freak and no longer feel him the coach of choice for the Minnesota Gophers.

He received a hurtful email from a fan since this seizure in the locker room. During a radio interview, he has challenged this fan to come face to face with him. "You want to walk in my shoes?" No response from this fan that I know of.

Being like many of us, HE REFUSES TO HANG UP HIS SWEATS!!!!!!!!!! He plans to remain the head coach for the U and not become that "unproductive stereotype" that is often associated with us, people with epilepsy. He also doesn't want the media focusing on his ep.

He sees himself first as a coach.

Dana first informed of this story. My epileptologist told us about him at my last support group.

angie
 
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Haylen_WebMD_Staff replied to saxofone1's response:
WOW! What a story - who would send a hurtful email about THAT?

I would never view you guys as "unproductive"!!!!

Thank you for sharing - he is a hero!

Haylen
 
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dancer86442 replied to saxofone1's response:
Hi Angie,

There are videos on YouTube, I think. W/ his Interviews w/ the Press. He didn't Want the Media focusing on him, but, after that email he took matters into his own hands & is now Openly Discussing his Epilepsy Status & Supporting All those w/ Epilepsy. I think it is Awesome. We have been Petitioning for over a Yr to get the NFL to Support us. Maybe, now they Will!

Take Care of My & give her a Hug for me! She is Special! I wonder if any of her posts are in the Archives? You mite wanna chek. Use Search this Community tool w/ her name. If so, the posts/comments may give you More Insight on how to Help her!

She quit a Group on FB, becuz, she felt 'unaccepted'. I Made her Re-join & Messaged the Group Leader to Please show her that we Do Care! She really does need all the Support she can get. BTW: If she doesn't bring up the Subject of 'Panic Attacks' after Simple Partials, maybe you can find a way to, discreetly, start a Conversation about those topics w/ your Group.

Love Candi
 
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dancer86442 replied to Haylen_WebMD_Staff's response:
Haylen,

I am sure the person who wrote that email isn't the Only one who feels the Coach should Retire. It is Ignorance about Epilepsy that drove him to post such a Hurtful Comment! We deal w/ Ignorance of the Masses on a Daily Basis. Even though Lots of us are Trying to dispel the Myths that have Surrounded us for Thousands of Years, it will take More Education about Epilepsy to Convince the Masses. We need the Media & those who have access to the Media to Help us!

You Accept us for Who we are! So, of course, you would never view us as 'unproductive'! WHY? Because you have been Educated! You Understand that People with Epilepsy & other Disorders are Still 'Normal People'. A Fact I Know I Appreciate!

Please tell WebMD & to Share More Knowledge on FB! Daily, weekly, I don't Care! It Does Help! I Have Noted how many People Follow WebMD's posts on FB. WebMD reporting on Epilepsy can & would be a Valuable Asset to Us! And Them! My Shout Out to my Local Paper was just a 'Drop in the Bucket' of Spreading Awareness! WebMD would Reach More People! And that would Help Diminish the Ignorance about Epilepsy!

HUGS! Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi Candi

I certainly will give My all the support that I can. I think she plans to come to more groups. She is in walking distance of the hosp. Our concern is that since it gets dark so soon, she will be walking home in the dark. She will be walking on busy streets though, so that's a plus.

Also, Candi, thanks for the info about YouTube.

H and C , I'll ask Dana to keep us updated on Coach Kill. She lives in a suberb of Mpls, she stays on top of what is happening in the world of ep regarding the Minneapolis metro.

Everyone have a good weekend. Send out a prayer for the RAIDERS. They need help!!!!!

angie
 
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dancer86442 replied to saxofone1's response:
Thank You soo much Angie. I know she enjoyed the First meet. So, I figure she will Return. Be Sure to Call her & let her know when another group meeting is Close to Happening. Ya know how Short/Long term Memory can be. HUGS & yes, my Prayers for Coach Kill & Raiders!

Love Candi
 
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saxofone1 replied to dancer86442's response:
Hi Candi,

I will be sure to remind My of the support groups. At the next group, I'll ask one of the co-leaders to put her name on the list of those who receive reminders by email. I'll stay in touch with her also. Maybe My and I can get together before the next meeting. I can probably use the paratransit to get me to her place.

I will definitely keep you updated on how the two are doing. Thanks for introducing us.

angie
 
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dancer86442 replied to saxofone1's response:
THANK YOU, Angie! For wanting to take My under your 'Wings'. I had a Feeling & Know: that the 2 of you will be Great Friends! Did I mention that she is an Artist & Creative? Ask her to bring some of her New Cards/Envelopes for you &/or others' to see. She commented on our group about how Bad her Memory is. So, Yes, an Email or Call, Will be Necessary. I suggested she get a Notebook & write Down Questions/concerns for Your Group! That reminded her that she Needed a New Calender Book, too. I will keep You updated on her Progress with my FB Group, also. I am Very Happy that she is seeking Support once again. Even if it Ain't here in Epland. I'm sure she will tell you Why. HUGS!

Love Candi


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