CEO of the national Epilepsy Foundation
November 12, 2013 - 2:00pm to 3:00pm

Joyce welcomes Phil Gattone, CEO of the national Epilepsy Foundation. As November is National Epilepsy Month, Mr. Gattone will discuss the foundation’s efforts to promote public awareness of epilepsy and end the stigma that is often associated with it.

» Listen
» Transcript
« Back to Schedule


Transcript

"DISABILITY MATTERS" 

NOVEMBER 12TH, 2013

1 PM CST

HOST:  JOYCE BENDER

GUEST:  PHIL GATTONE

 

*******

 

This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) or captioning are provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

******

   >> Welcome to "Disability Matters" with your host, Joyce Bender. All comments, views, and opinions expressed on this show are solely those of the host, guest, and callers. Now the host of "Disability Matters," here's Joyce Bender.

   >> JOYCE BENDER:  Welcome to Epilepsy Awareness Month. As you might guess by now, that's very personal to me since I'm living with epilepsy, and we are going to have a great show for you because we have the CEO of the National Epilepsy Foundation with us. He is an awesome person that I love very much, very committed to the crusade.

   Welcome, Phil Gattone.

   >> PHIL GATTONE:  Thank you, Joyce. It's great to be with you.

   >> JOYCE BENDER:  I know we have a lot to talk about, but as I am going to on the next several shows, I want to give all of you with disabilities an update and those who are not in the disability community that listen to the show, an update on what is going on with CRPD and what an honor it is to have talking about that for the next few minutes, a really well-known national so rights leader.

   Marca Bristo. Welcome to the show.

   >> MARCA BRISTO:  Hello and good afternoon to both you and Phil.

   >> JOYCE BENDER:  Good afternoon. So, Marca, I know today, by the way, is a very important day for people to call in, and your office and what's happening with the Convention on the Rights of Persons with Disabilities, what we need everyone listening to the show to do.

   >>MARCA BRISTO:  Sure. Thank you. The Convention on the Rights of Persons with Disabilities, also known as the Disability Treaty, went before the Senate. As you may recall last year, the treaty fell just five votes short of being adopted by the Senate. Treaties require a supermajority. Therefore, we have a need of 67 votes and we thought we had those votes until the last-minute maneuvers that caused some of these senators to feel that the treaty was moving forward during a lame-duck session and that treaties shouldn't occur during a lame-duck session. So we've taken that issue off the table and, therefore, we're very hopeful that senators, when they return for a vote on this in the coming weeks, will do the right thing and do what people rarely get that opportunity to do which is take a second chance to do the right thing.

   We will still need to get 57 votes. We believe we're just five or six votes shy of that right now, but we believe that quite a few senators are remaining open to the process until they see what kind of amendments come forward through the Senate process. We believe that we will be able to prevail this time, but not without the support of the disability community.

   Last year, we had over 300 organizations. This year, we've got more than double that with over 800 organizations that are supporting this. And that is including 21 of the major veterans' organizations, a broad coalition of some rights organizations, AARP, the Chamber of Commerce, a coalition of religious organizations of over 20.  So we pretty much have everybody that looks like America supporting this treaty, And except for one or two organizations that have launched a campaign of misinformation to scare people that this treaty will do things it absolutely will not. I know my community that when we put our heads together and decide to do something, we get the job done. I am really happy to report that going into last week's hearings, we have been outnumbered on phone calls by the opposition almost ten to one.

   Last week, we turned the tide and outnumbered them very significantly so we're calling upon our community, again, to make calls, calls, and more calls. You can do so by going to disabilitytreaty.org. We make it easy for you and identify who we need to target which, right now, are some of the members of the Senate Foreign Relations Committee.

   >> JOYCE BENDER:  Yes, and, Marca, just a few highlights for those that do not know why this is important. What would this do for the world?

   >> MARCA BRISTO:  Well, at the global level, the treaty is the first human rights treaty of the 21st century. It essentially says to the world that people with disabilities deserve an equal opportunity and that countries should adopt nondiscrimination laws and implement programs and procedures to enable people with disabilities to have that equal shot.

   As you know, the ADA was the first law in the world that really began to open those doors, and many countries began the process to follow our lead. However, the playing field has shifted upon the UN's adoption of this treaty.

   And right now, America is one of the few countries that has not yet ratified it. Over 130 countries have ratified the treaty. It is rather embarrassing that a country that led the world is not there in the middle of this to help lend our expertise to make changes. We think it's very important for America to lead in this venue. When we do, we believe that the outcomes we'll see in other countries will level the playing field for American business, will make it easier for disabled people and our families to travel, live, study, work, and serve in the military overseas. And most importantly, we believe that America will reclaim its moral authority and our ability to really help disabled persons, organizations, and others in implementing this treaty globally.

   >> JOYCE BENDER:  And I just want to highlight before we close off on this discussion that A, all these veterans' groups are behind this. It was really impactful to hear what Congresswoman Tammy Duckworth say who does use prosthetics, imagine in some countries where they would tell you to store those.

   >> MARCA BRISTO:  Absolutely.

   >> JOYCE BENDER:  She is a veteran, so highly thought of. I just want to remind you all veterans' groups are behind this. I want to also remind you of the incredible bipartisan support because how proud was I to see two governors from Pennsylvania, Dick Thornburg and Tom Ridge, both Republicans seated at the front testifying how important this is. So if you're listening to the show, don't be thinking this is some partisan thing. It is bipartisan and wonderful and important that you make those calls today, and you've got to make them nonstop, and you've got to go to the Web site. What is that again?

   >> MARCA BRISTO:  Disabilitytreaty.org, and I want to stay from my -- and his coming out party, if you will, as a member of the disability community testifying before the Senate Foreign Relations Committee. He claims his disability proudly and he spoke of how important it was to him as a disabled veteran to see the United States take a leadership role and really come forward and ratify this treaty. So what I need to ask your listeners to do it is what our colleagues in Washington, D.C. did last week:  Show up in great numbers. We not only filled the hearing room, but we filled two overflow rooms, including the largest one in the Senate. And I believe that when our community decides to do something, they do it big so we're asking for calls, calls, and more calls.

   It takes not more than five minutes. You don't need to understand the details of the treaty. They're just taking a count of how many people support it and oppose it. So when you make the call, all you need to do is say I am so and so from what state and I'm calling to tell your senator that I want him to support the disability treaty. That's it. That's how long it takes, and I believe we're only asking to make six phone calls. You can do them all in five minutes.

   Thank you, Joyce, for having me and your commitment and that you mentioned this was epilepsy awareness month. I want to make a shout out to my good friend and yours, former Congressman and father of the Americans with the Disabilities Act, Tony Coelho. Tony has been a stalwart leader of this campaign in helping us to get the treaty elevated and reaching out to everyone he knows. And I'm really helpful that the Epilepsy Foundation will continue its important work in letting your members know how important this treaty is to Joyce, to Tony, and to all of us in the disability community.

   >> JOYCE BENDER:  Phil, we can count on that, right?

   >> PHIL GATTONE:  Absolutely. And I have to say, Marca, it is an honor to be with you on Joyce's show and, Joyce, as you have also received national awards, I think our listeners need to know about Marca. I think most do, but those who don't, Marca is one of the most recognized leaders in the disability community. She has received so many appointments and awards, including the Distinguished Service Award from the president of the United States. The Americans with Disabilities award with Tony for the passage and creation of the law. She is a remarkable leader, named as Chicago's 100 most powerful women. She is an amazing leader and a great friend, not only to people with epilepsy but to people with disabilities across the country and around the world.

   >> MARCA BRISTO:  Thank you, Phil. People wonder why we do this. You know, why I do this is because of my brothers and sisters, 1 billion of them who live all over the world, some of them in the most horrific conditions. We heard not long ago about a woman being rounded up because she had a disability, tied to a tree in a place where prayer circles were being led to stamp away the evil spirits. This is where she lived. We hear of stories of people with disabilities trying to come to conferences, and they get halfway around the world and then are told that they can't go on the second leg of the flight because the second air carrier won't allow a seeing eye dog to fly. We see young people just taken away from their families just because they're disabled and put into institutions. That's why I do this. I do it because people around the world are relying upon us to be partners in this as we continue to make our rights and stronger here in America and work towards them. We need to also be part of the equation in helping and learning from our colleagues overseas. While America does have the gold standard, there's still things we can learn, and we do so now and will only do so more as out involvement with the CRPD increases.

   >> JOYCE BENDER:  Phil, before Marca goes, she can get you information that we can put on our Web site. Remember there are 3 million Americans living with epilepsy. If you can give a portion of that amount, it would have a tremendous impact. And as Marca said, you know Tony is so well-known everywhere in the epilepsy community, let alone politics, disability, everything else.

   So, Marca, you get something to Phil.

   >> MARCA BRISTO:  Absolutely. Earlier I said do it for Tony. do it for Justin Dart and Senator Bob Dole and former President George Bush. Do it for Colin Powell and Madeleine Albright. And do it for everyday people with disabilities who have all joined together to demonstrate their support for the treaty. And thank you all for having me here. If you have additional questions and you want to speak to the U.S. International Council on Disabilities Office, that number is 202-347-0102. Or you could use our Web site which is USICD.org. The phone number is 202-347-0102. The e-mail is USICD.org. I don't want to confuse you for your phone calls. We made it easy. Just go to disabilitytreaty.org and make lots of calls.

   >> JOYCE BENDER:  You heard her. I challenge you.

   >> MARCA BRISTO:  Today, please. Thank you. Goodbye.

   >> JOYCE BENDER:  Goodbye.

   Phil, you can imagine how many people around the world with epilepsy are impacted from this. Go to the Internet. You can click on the site wherever you are and get connected to the information you need to make this change, and it is so fun to be able to be part of that kind of reform. That kind of change is really fun to be part of and you can feel like you're making a difference. Sometimes you wonder can one person make a difference, and in this case, one person, one phone call can make a difference.

   And that's right. And back to our superstar on the radio show today. Phil Gattone, is the CEO of the national epilepsy Foundation in America. And I think, Phil, could you take a few minutes and tell our listeners how you first became involved in the world of epilepsy?

   >> PHIL GATTONE:  Sure and thank you for having me on. It's such a privilege to be with you, you as a nationally recognized leader. I have to say it is an honor to be with you and to work with you on this mission. We found our son in April of 1991 in his bedroom having a seizure, and that was our rude awakening into the world of epilepsy. And we found our son, Philip, when he was four years old, and he was blue around his mouth and was having a generalized seizure. We thought he had died. We didn't know what has happening. The paramedics came and an hour later, his seizures stopped, and that was in the emergency room of a local hospital. And he started down the road of being very brave, and we started down the road of trying to find good care and answers to questions that we never thought we would have to ask. And that's how we became involved in the world of epilepsy. And through his journey, we learned about an entirely unique journey that everybody faces with epilepsy, and that started us down the road of getting involved with the Epilepsy Foundation and with the community of people living with epilepsy.

   >> JOYCE BENDER:  You know, I've always said give me the parent of a child with a disability and look out. Look out. And so you all know this, I have met Phil, his son, who is very successful and doing very well, and that just once again dispels the stigma about people living with epilepsy.

   But, you know, it's one thing, Phil, knowing this; it is another thing you decide I'm going to be an advocate. I'm going to work on this. I want to know what made you and your great wife, Jill, the first lady, what made you both decide to become advocates.

   >> PHIL GATTONE:  Well, two things made us decide to become advocates, and I think for your listeners, some of the same motivations exist as out in the community. First and foremost, we saw the injustices that were happening to our son and to other children with epilepsy, not getting the services he needed in school to achieve, not getting the kinds of resources and access to those resources that he needed that we felt as his parents he needed in order to reach his potential in life.

   And so often this happens intentionally or unintentionally, it happens, and it takes advocates to make this change real for one person or for many. And our own experience caused us to be advocates, but also we were inspired by others. As we got to know families and got to see the work that was being done and the work that was needed to be done, we really were inspired for people who had epilepsy and other disabilities as well where they didn't have access to the care they needed. They didn't have the resources they needed to reach their potential.

   When I saw the leadership that was taking place from others and I saw firsthand how change can actually become real, it inspired me and my wife, Jill, to get involved. We actually went back to school recognizing that in order to be good advocates, we needed to further our education. We both decided that education was the key to success for our son and for people with epilepsy. If the community understands epilepsy and the people with epilepsy understand their rights, we can make some changes, and that's what drove us forward. As a result of that, we were able to, first as volunteers, and I have to say, Joyce, volunteers make this world. It makes everything move, and I just want to thank the thousands and thousands of volunteers who are helping the Epilepsy Foundation across the country and other organizations drive this change forward.

   Volunteers play a critical role in our success, and those people who are stepping forward to volunteer their time and resources are advocates, and they are as important as anybody on our staff team so I'm just thankful for that. We started out as volunteers and advocated not only for our son, but for other people with epilepsy, given that lead to opportunities within the epilepsy community to take on some leadership roles so that's how we got involved in Chicago with the Epilepsy Foundation of Greater Chicago and then with the local epilepsy centers as well.

   >> JOYCE BENDER:  And I agree with you about volunteers. You know, it's amazing the passion and dedication of volunteers and, really, the changes they make in this world. And never think that one person can't make a difference. You already heard us talking about Tony Coelho living with epilepsy and what he did and what he accomplished.

   So, Phil, here you are, when I met you, an executive director, Epilepsy Foundation in Chicago. Did you ever think you would move into this role? And let me ask you, do you feel that prepared you for this role.

   >> PHIL GATTONE:  I really think being involved at our Chicago affiliate helped us a great deal to step in and serve at this leadership role at the foundation. The reason is when you get involved at the community level, as you know, Joyce, for all of your national recognition and appointments, you have a community heart. You have the spirit to help people in communities and build communities, and that's what really helped me step into this leadership role, understanding what the needs are at the community level where all the work is really, really done day to day, day in, day out, by the army of leaders across the country to understand what it means to learn from a family with epilepsy, what their experience is, what their needs are, and then identifying all local ways to help people get connected to what they need, whether it is on-line or geographically locally in their community to find those resources that help them change their lives. Never is it more evident that when something is found, a resource is found locally for somebody, you can just see a life change right before your eyes.

   When somebody goes from having seizures to finding seizure control, their life changes dramatically, and even if their seizures don't come under control, finding the support and knowing there's advocacy at the local community level for things that they need, it changes somebody's life, and that's what I've learned in my work in Chicago. So now in my role at the National Epilepsy Foundation, my focus is determining how we can best help our local communities build the resources for families with epilepsy. And so that's how really working in Chicago at an affiliate helps me serve in this role.

   >> JOYCE BENDER:  And I think that background starting at the grass-roots level is really significant because, you know, some people, they walk into this and either A, they don't have the background of epilepsy or, B, they don't understand advocacy at that level. This would be pretty hard to do. So I agree with you, Phil. And now here you are, CEO, Phil. So what would you say are some of your greatest challenges?

   >> PHIL GATTONE:  Well, I think that first and foremost, Joyce, this is a privilege and an honor to serve in this role. And the challenges that I face are really representative of the challenges that people with epilepsy face, and that's what I'm thinking about every day when I come to work. I have to say that the challenge I face right now is really delivering on the promise that anybody with epilepsy, anybody, can call us, can reach out to the Epilepsy Foundation, can go to our Web site and get the answers to the questions that they have about their own epilepsy so it's really fulfilling the process in the organization regardless of where they are in their journey with epilepsy. Some people have very-difficult-to-control epilepsy today, and they're trying to find answers to try to find out where can I go to get the best care possible for me or for someone I love.

   And so they have significant and urgent concerns, and we have to make sure that we deliver on that process no matter where everybody is in the country to find those resources at their greatest time of need. Then, we also have people whose seizures are well-controlled, and they're looking for opportunities to share their story or to find a job or to achieve a goal that they have in life, and they're looking to the Epilepsy Foundation to help them achieve that goal. And we want to make sure that anybody who's looking for an opportunity to get the freedom that I think you, Joyce, have been leading with your organization for many years. You understand the freedom that comes with a person finding a job. When someone calls up and says, you know, I'm looking for help. I'm looking for work, to be able to help them find that connection and equip them to be able to interview and get that job and get that goal in their life, that's where we really have to be consistent across the country. And bringing people together is a big challenge to do that. And I look forward to continuing to achieve our goals toward that end.

   >> JOYCE BENDER:  And, boy, Phil, just getting that news out to all these people that really don't know, they don't know or understand epilepsy and don't know where to go for a doctor, or they go to a doctor that doesn't understand it. I hope the day comes that through a lot resources that we have, it will be able to help more and more people. And while I'm on that topic, here we are, Epilepsy Awareness Month, and Thanksgiving. You know, I am one that believes in random acts of kindness and in giving back. So if you're listening to the show now, we can't help a child, we can't make a change without money. And I don't care how small that donation is. Every dollar counts. And I would really, really think you should take time to even do it now or budget now to make a contribution to the foundation.

   So if someone wants to do that, what do they do?

   >> PHIL GATTONE:  Well, they can go on our Web site which is epilepsyfoundation.org, or they can call our 800 number and they can make a donation at our 800 number which is 800-332-1000, 800-332-1000 or they can go on-line, epilepsyfoundation.org and make a donation on-line. And it is so appreciated. The work that is being done across the country is really dependent on support from individuals across the country. We're so thankful and grateful for that, and we're being excellent stewards with our dollars putting every dollar to good use for programs and services around the country for funding of valuable research and innovative and new therapies for people living with epilepsy and raising awareness.

   One of the most exciting things that's happening, Joyce, is a public awareness campaign that will be on television, on cable, in living rooms across the country. We're so excited about it. It's in partnership with a gentleman who has had epilepsy for some time. He actually owns a business in Las Vegas. He owns a pawn shop in Las Vegas, and people come into his store and they negotiate. Is a fun TV show where they negotiate a different price. His name is Rick Harrison, and he runs the shop with his father and son, and Rick has epilepsy. He agreed to help us raise awareness and building public service announcements and making appearances so we're going to build on Rick's kindness and his show "Pawn Stars" which is a really funny name but a wonderful show. He's going to help us raise awareness about epilepsy across the country.

   >> JOYCE BENDER:  Okay. Now, I've got to say I bet you know who this is and the show because you know why? When I told a few people, I had to admit, I'm sorry to admit I do not follow the show, but when I mentioned the show to other people, oh, my God. See they're, like, is he going to be at the walk? This guy has a huge following so that is a really amazing thing.

   >> PHIL GATTONE:  Amazing. He wrote a book about his accomplishments, and the first chapter of his book is called "The Storm in my Head," and talks about his epilepsy. He had seizures when he was eight, and he said when he was recovering from seizures, he would read and he would gather information and that's how he learned so much about history and so many different things. His epilepsy is controlled now, but he remembers when he had seizures, and he wants to help others that are going through that journey.

   We also have a wonderful man, the coach of the University of Minnesota football team who has graciously and willingly offered his help to raise awareness and has been a great example of courage for people with epilepsy. I had the privilege of meeting him and his wonderful wife, Rebecca, up in Minnesota. And the Epilepsy Foundation of Minnesota executive director, Vicky, who is just a wonderful leader, has done some remarkable work to raise awareness, and the coach has been a great example to others. So you have people like Rick Harrison and Jerry Kill who are putting themselves forward to say, you know, this is something that we have. This is something we're not ashamed of. This is something people need to be educated about, and that's what's going to break through the stigma. We're going to start educating and changing lives by raising awareness.

   >> JOYCE BENDER:  Wow! In case you don't know, this man went through such discrimination. Do you want to tell quickly that story, Phil, of what happened to him?

   >> PHIL GATTONE:  There were a couple of news articles that came out following Jerry Kill's seizure on the sideline. He was really berated by a couple -- for the uneducated writers, journalists, and I use that term loosely. There was a big outcry after one of the reporters said, and I quote, I just remember the quote because it's ingrained in my mind. He said, no one who buys a ticket to watch a game at the University of Minnesota should have to endure the site of a man writhing on the ground. And I thought, you know, this is so silly because you have football players who are on the field and getting hurt on the field, having injuries on the field, and that somehow is perfectly okay. But a person experiencing a seizure on the sideline is unbearable to this journalist. There was such a backlash and outcry against what was written, and the community just came together up in Minnesota around this man and sent
them -- they have amazing football games up there. Coach has been an inspiration for this year, and he has shown courage.

   We had an epilepsy awareness day at the University of Minnesota game against Nebraska, and we handed out information about epilepsy and had things on the Jumbotron. They hadn't beaten Nebraska since 1960. The last 16 times they played, they lost to Nebraska. Minnesota won the game and they're all shouting, Jerry, Jerry.

   I think people are good, Joyce, and I think people, when educated and understand what epilepsy is, we have a compassionate community, and I think that people want to know how they can help. And this is what's happening in Minnesota. And I believe this is what's going to happen around the country as we continually raise awareness and effect change.

   >> JOYCE BENDER:  Isn't that a story? That is such a great story. That's all I can say. And I'm proud of him.

   Well, Phil, we are now merged with another group, the Epilepsy Therapy Project which we're so excited about so we're the Epilepsy Foundation, but we have merged with the Epilepsy Therapy Project under the great leadership of Warren Lambert.

   Phil, would you talk about that, the benefit it brought to us and how it is going to help the foundation?

   >> PHIL GATTONE:  Absolutely. Their project and the Epilepsy Foundation have been partners for a decade because we have a funded project together so we've been good friends in our organizations for a long time. But Warren Lambert and Orrin Devinsky, co-founders of the Epilepsy Therapy Project felt that based on the Institute of Medicine report that came out in March of 2012 thought it would be best if we leveraged our resources and came together to strengthen our combined efforts to change the future for people with epilepsy. And when Warren came forward with that vision, I was so excited, and our board at the time, led by Brian Smith, who is an amazing physician and leader, he just jumped at that opportunity and said, yes, let's leverage our resources and help people with epilepsy. In January, we merged with Epilepsy Therapy Project as a foundation, and our job and mission is to improve the quality of life of people living with epilepsy, and this is a natural next step for us because therapy, new innovative ideas that are coming forward to help people with epilepsy in a time frame that matters to them, is so important.

   When you find that you have epilepsy, you want to know what resources are out there for me that can help me. And that's what the Epilepsy Therapy Project has been about for over ten years. So to have them as part of the Epilepsy Foundation and driving forward new ideas is just a tremendous blessing for our organization. And it is a message to the community that says we are stronger together. It is very important to understand that when you come together as we have, you can do so much more and it has been evidenced in our fund-raising efforts, in our marketing efforts. We are merging our two Web sites together so at the end of November, we're going to have a launch of epilepsy.com which is going to be the most visited Web site in the world for epilepsy. It's going to be a very powerful resource for people to get all of the answers they need and get connected to communities and their them, both on-line and geographically, and get connected to communities that can help.

   >> JOYCE BENDER:  Wow! I know I'm excited about this, and I think it is a great thing. I really do, and I commend you and Warren and Brian, Phil, for being able to bring this together. You really have done a lot since you came on board.

   >> PHIL GATTONE:  It's been a good year.

   >> JOYCE BENDER:  I'll say. I don't know if people are familiar with the IOM report, but I know this is the first time there was such a lengthy study done on epilepsy, and I know there were some major findings, and I thought maybe you could talk about that.

   >> PHIL GATTONE:  Absolutely. The Institute of Medicine, for the first time ever, did a study and researched epilepsy and the needs of people with epilepsy. So they decided that they needed to take a look at this, and they came out with 13 recommendations that they had for epilepsy, and it's really interesting. The fact that they did this was so remarkable that the entire epilepsy community came together to help formulate these recommendations and provide testimony for this IOM committee. So the bottom line is they have recommendations that include some of the things that doctors have to do differently, and they have some things that the CDC and other governmental agencies have to do differently. About six of the recommendations centered on the things that the Epilepsy Foundation and people with epilepsy can do to help improve the lives of people with epilepsy. So they were very specific recommendations about raising awareness, delivery and coordination of services and information.

   So, for example, one of the things they said is that they believe we need to have one Web site that people can go to to get the answers they need because one credible Web site, one kind of a one-stop shop would be very important. And so that's where Warren and myself and Brian and Kim, executive director of the Epilepsy Therapy Project, will say we need to combine our Web sites by the end of November. It's going to be spectacular. It's going to be epilepsy.com, and it's going to be a completely new site at the end of November and it is going to be spectacular.

   Another recommendation that the Institute of Medicine had was raise awareness in a different way. I spoke to you earlier, Joyce, for the first time as a result of that recommendation, and we're really making great strides in fulfilling that recommendation. We're going to produce multiple public awareness campaigns that will help reduce the stigma of epilepsy and educate people to get the answers they need. They have a whole series of coordination recommendations and awareness raising recommendations, and we developed a team at the Epilepsy Foundation to address those recommendations head on so that we can proudly say back to the Institute of Medicine, thank you for these recommendations, and here's how we're accomplishing those goals.

   >> JOYCE BENDER:  Yeah, and how could someone get access to that, Phil?

   >> PHIL GATTONE:  And there's an easy way to find it. If you just go to Google and you type in IOM and then the word "epilepsy," you'll see an on-line version of the report. The actual Web address is IOM.edu/epilepsy. But just Google IOM and put a space and then type the word "epilepsy." 

   >> JOYCE BENDER:  Okay. I would suggest if you're interested, it really does have such important information so if you're interested, I would suggest to go there or tell others if they're interested.

   Phil, I know we don't have a lot of time left on the show, but I would like to talk about the Athletes Project that you have. Could you talk about that?

   >> PHIL GATTONE:  Absolutely. As part of our awareness-raising initiatives, we decided that we would start something called "Athletes vs. Epilepsy." And the reason we did that is we have athletes who have been tremendous heroes for us, some of whom have epilepsy, others who have a family member living with epilepsy. And they want to help us raise awareness so we started this initiative first and foremost to bring forward leaders in athletics like Jerry Kill as a coach, like a wonderful and amazing Jason Snelling of the Atlanta Falcons, who I know you know well, Joyce, and Jason has been a tremendous advocate. Geoff Pope whose grandmother raised him and had epilepsy, and he has been an amazing leader for us and jumping on board and helping us lead the Athletes vs. Epilepsy Foundation. And then Chanda Gunn who is the U.S. women's hockey team goalie who has epilepsy. She's a phenomenal athlete, and she's come forward to help us. Zach McGinnis who is an All-American swimmer has come forward. He has epilepsy.

   And what happened was amazing. Not only are we raising awareness through these major athletes, and you'll see this campaign roll out in 2014 in a much more powerful way. But we're also encouraging people in Pennsylvania, Chicago, Houston, Miami, across the country that if you're a weekend warrior and you like to run 5Ks or 10Ks or half a marathon or bike ride, you can do those events as a part of Athletes vs. Epilepsy. You can run or ride for this cause just like people ride for LIVESTRONG or different groups across the spectrum of health. You can now run or ride for Athletes vs. Epilepsy, and I think that's really a wonderful opportunity for people to raise awareness, raise some much-needed resources so that can help communities across the country, and it is a way to stay in shape, having fun, and do it for a good cause.

   >> JOYCE BENDER:  Right. And, you know, just to mention another person, at the epilepsy walk here in Pittsburgh this year, Tony Watson, relief pitcher for the Pirates and the talked about shark tank, he usually comes every year to the walk. This year he didn't come. Brian Morris came, other relief pitcher, and you know why? He told Tony Watson, I'm sorry, you can't do this. You can't go. That's why his wife has epilepsy so it seems like there are just more and more athletes that want to help and want to get involved, and that's just another example. And as you mentioned, both in Geoff Pope and Jason Snelling are awesome.

   >> PHIL GATTONE:  They're awesome. The basketball team of University of North Carolina Charlotte, they came together and athletes and decided to help the Epilepsy Foundation of North Carolina at their local community walk so they came out and participated and helped as volunteers that day. Talk about great men, great young men, who are contributing to a great cause, and they're doing it in their own community. If you're a basketball or baseball or football player and you're in high school or playing college sports whatever it is and you want to get involved, you can do that for Athletes vs. Epilepsy, and it is really a fun way to help as a volunteer to raise some much-needed resources and awareness.

   >> JOYCE BENDER:  Before we end the show, I just want to talk a few minutes about you. And before I do that, I want to say again. Remember what I said about making a contribution to the Epilepsy Foundation. My great friend, Yoshiko Dart, has always talked about giving back. And whether or not you even have epilepsy, if you have a disability, you're part of the community. So, again, if you want to contribute, you can go to the national site. What is that again?

   >> PHIL GATTONE:  It's www.epilepsyfoundation.org and you can also call 800-332-1000 and we'll be glad to help you and thank you for your donation.

   Joyce, thank you for that. I do want to tell you something. When it comes to life-changing experiences, I think we all have a story to tell and very briefly, I can tell you that our story with Philip is not unique. There are families across the country that are living today these stories. And from November as National Epilepsy Awareness Month, we have an initiative called "Story Days." People can tell their story just by clicking on a video on their phone and telling their story. It doesn't have to be a professionally done video, you can just tell your story. We have a very easy way to put your story on-line, and we're telling stories across the country about how people with epilepsy, living with epilepsy, and how they're getting help from the Epilepsy Foundation. So if you go to epilepsyfoundation.org, you'll see a link to our Story Day and every day, we're telling a different story from a different affiliates from around the country, a different family telling their story and how the foundation has helped them because the people might ask what does the foundation do. How can they help me?

   If you look at these stories, you'll understand exactly how the Epilepsy Foundation is helping people and families across the country. Philip had an aide in the classroom after having brain surgery that removed 12 centimeters of the right side of his brain because of these just insidious, recurring seizures. But no matter what happened, no matter what medication he was on, the seizures continued and we ended up having brain surgery.  During his recovery, he had to have an aide in his classroom all the way to 8th grade.

   One day I went in to visit his class and I saw this aide sitting next to Philip, and I was just sitting quietly off to the side and this one little boy came up to me and said, do you see that boy across the room? I said, yes, I see that boy in the classroom. He said, he's so bad he has to bring his grandmother to school every day with him. And that really struck me that these little kids didn't understand why Philip had an aide in the classroom and why he needed help in the classroom so we educated the kids. We educated Philip's epilepsy, and we had Philip talk about his situation. He's not afraid to talk about it, and even to this day, he's not afraid to talk about it.

   After 8th grade, Philip was recovering from the cognitive deficits that he had been enduring due to the reoccurring seizures, and he was able to move forward without an aide in the classroom. He graduated high school and went to college and graduated with a degree in computer engineering from Southern Illinois University in Edwardsville, Illinois. Now, he's living and working independently, and we feel very fortunate because we know that not everybody has the same outcome when it comes to epilepsy. Sometimes epilepsy persists now matter what you do and it can really impact your life, and that's when you need to know that there's a place you can go to to get the support that you need to make it through day by day, and that's the Epilepsy Foundation.

   We're privileged now, Jill and I, to be serving in this way, and we're just so thankful to you, Joyce, as a member of our national board directors and as a leader of the American Association of People with Disabilities. I just think what you're doing and what Tony Coelho is doing and what Warren Lambert is doing is merely changing the world, and Jill and I are thrilled to be a part of it.

   >> JOYCE BENDER:  Well, it is my privilege. This is such a passion to me so I know how you feel, Phil.

   If you had to tell me what you believe is your greatest accomplishment, which there are so many I don't even know how you're going to answer this, but what would you say it is?

   >> PHIL GATTONE:  Well, I think all kidding aside, I was going to say that my wife has stayed with me for 27 years is my greatest accomplishment. But I will say that. Bringing people together, Joyce, I think is a great privilege, and I consider it a great accomplishment to be able to bring people together for our common purpose and a common cause. I feel that has been my greatest accomplishment, and I understand very well that my work is not done because we have a lot of people to bring together into a shared vision, and that is continuing work. I'm proud of that, and I think that's my great accomplishment is bringing people together to achieve a common goal.

   >> JOYCE BENDER:  Yeah, that is awesome. It really is. And you're doing it, Phil. I'm very proud of you and can't tell you how fortunate we are to have Phil Gattone running the Epilepsy Foundation. It's is the real deal, and he is just so bright and so passionate, and I didn't know he's going to take it so far.

   So, Phil, as a woman living with epilepsy, thank you for everything you're doing to help us.

   >> PHIL GATTONE:  Thank you, Joyce. You are a leader among leaders, and I'm honored to work with you.

   >> JOYCE BENDER:  Well, Phil, thank you. I wanted to just ask you one last question. If you had a message to leave with our listeners today, what would it be?

   >> PHIL GATTONE:  Well, anybody who's listening to the show should know if you have epilepsy or any disability, you need to know -- my message to you would be you got a friend. You are not alone. When you feel lonely, you should know something, that you have friends that care. I and Joyce are those friends and we are here for you. So my message to you is that when you need help, you need to know that you have a friend at the Epilepsy Foundation, at the AAPD, at the different organizations that are out there serving people with disabilities, you have a friend. Never forget that, and I hope that someday that we can all say that we are one community helping each other and just want to make sure that everyone knows you're not alone, and you have a friend.

   >> JOYCE BENDER:  How true that is. Well, listen. We end every show with a quote from a famous civil rights leader, and before I do that, I just want to say next week, Pat Shiu at OFCCP talking about Section 503 of the Rehabilitation Act. Don't miss that show. But our quote for the end of the show is when Tony Coelho said, "Epilepsy does not define me and does not stop me." 

   This is Joyce Bender, America's voice, where disability matters at VoiceAmerica.com. Talk to you next week with Pat Shiu.

   (Broadcast concluded 1:58 PM CST)*******

This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) or captioning are provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.