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Steve Gleason Lives with ALS; Buddy Valastro Pushes for ALS Cure; White House Response to Snowden.

Aired July 25, 2013 - 13:30   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

(COMMERCIAL BREAK)

SUZANNE MALVEAUX, CNN ANCHOR: It is mysterious, frustrating and even frightening. Little is known about it. We are now shedding light and going in-depth on a killer disease. It is called ALS. It stands for amiotropic lateral sclerosis. It kills more than 100,000 people a year, it moves fast taking away people's abilities to control their muscles causing patients to quickly lose their ability to speak, swallow, breathe or move.

On Tuesday, I shared my mother's story. She was diagnosed with the disease a year and a half ago. The disease forces her to breathe with a machine. She has a great attitude, getting around in a motorized wheelchair and enjoying our family.

Technology is improving ALS patients' quality of life in many ways. One of them is former NFL player, Steve Gleason. With the tap of the toe or a blink of an eye, Gleason and others are redefining what it means to be alive.

Here's his story.

(BEGIN VIDEOTAPE)

MALVEAUX (voice-over): It was the play that brought back the city of New Orleans. Saints' Steve Gleason blocking the punt that would send his "who dat" nation to victory.

(SHOUTING)

MALVEAUX: The win was especially sweet because it was the Saints' first home game in the Superdome since Hurricane Katrina. In that moment, Steve Gleason, the handsome, 5'11", rock-solid 212-pound safety instantly became a New Orleans hero. But five years later, in January of 2011, at age 33, Gleason got the shocking news, he was diagnosed with ALS, or Lou Gehrig's disease, a fatal condition that would soon paralyze him and rob him of his abilities to speak, eat or breathe.

DR. JEFF ROTHSTEIN, ALS SPECIALIST: It's a disease where the cells in your brain and spinal cord, the cells that control our muscles slowly degenerate. They die.

MALVEAUX: When I met Steve and his wife, Michelle, at their New Orleans home in March, I was struck by just how young and how beautiful they are. Their playful relationship and his flirtatious smile.

MICHELLE GLEASON, WIFE OF STEVE GLEASON: He was just like this big he-man strong guy, and he's still strong in certain places but it's a huge contrast.

MALVEAUX: Two years into the disease, Steve is paralyzed, and uses his synthetic voice to speak for him.

STEVE GLEASON, NFL PLAYER WITH ALS: It has not been easy.

MALVEAUX: Steve recently was thrust into the spotlight after three Atlanta radio deejays mocked him using a fake automated voice as his own.

(BEGIN AUDIO FEED)

UNIDENTIFIED RADIO HOST: Knock knock.

UNIDENTIFIED RADIO HOST: Who's there?

UNIDENTIFIED RADIO HOST: Smother.

UNIDENTIFIED RADIO HOST: Smother who?

UNIDENTIFIED RADIO HOST: Smother me. Do me a favor.

(END AUDIO FEED)

MALVEAUX: The deejays were fired and apologized to Steve later. Steve issued a statement saying, "Received and accepted. We have all made mistakes in this life. How we learn from our mistakes is the measure of who we are."

Steve says he's changed, too.

STEVE GLEASON: My capacity to love and to love myself, to be loved has been exponentially increased since my diagnosis.

MALVEAUX: When Steve first got the diagnosis, he and Michelle were faced with a critical decision, whether or not to have a child.

MICHELLE GLEASON: In reality, I don't know what I was getting myself into or what he was getting himself into --

(LAUGHTER)

-- Let's be honest, but I still believe it's the best decision we've ever made as a couple.

MALVEAUX: When Rivers was born, Steve also knew he'd soon lose his ability to speak, so he started recording bedtime stories that he plays for Rivers today.

STEVE GLEASON: Papa Pea would fling little pea off a spoon.

MALVEAUX: They also made a decision to go public with the disease. (CHEERING)

STEVE GLEASON: This is the first time I've been in front of any cameras since we went public in September, so obviously I don't know how to move or talk quite the way I used to.

MALVEAUX: Launching the No White Flags campaign. At the Super Bowl in 2012, he teamed up with one of his mentors, former Ravens linebacker, O.J. Brigantz, who also has ALS. Steve recruited star NFL players and coaches to generate this dramatic PSA.

(BEGIN VIDEO CLIP)

UNIDENTIFIED MALE: You can't move your fingers.

UNIDENTIFIED MALE: Your mind keeps working but your body doesn't respond.

UNIDENTIFIED MALE: Soon you can't hug your mother or pick up your child.

(END VIDEO CLIP)

MALVEAUX: While he doesn't believe the head injuries in his football career led to the disease, researchers are looking into the possible link.

But Steve is looking at technology to improve the quality of life for those with ALS. He's raised millions of dollars to build a state-of- the-art facility in New Orleans for ALS patients.

MICHELLE GLEASON: Control the A.C., turn on lights and working on their computers.

MALVEAUX: It's outfitted with eye-tracking technology like that in his home to give residents the ability to control everything around them.

But even with all this, Michelle says they have their difficult days, most recently as they prepared for a dinner date.

MICHELLE GLEASON: He's in the suit, just pissed-mad at the world, actually, drove into our office and drove him into the closet and got stuck and started crying, so I started crying, called my mom and said we're not going to come. So she started crying. Ten minutes later after we both sobbed, we said look we're going to do this.

MALVEAUX: And they are doing it. Steve marked his one-year anniversary with ALS with a skydive. He also sponsors adventure trips for other ALS patience, recently trekking up Machu Pichu and canoeing down the Missouri River.

Steve says most people live as if they'll never die so that's why he's living life to the fullest.

(END VIDEOTAPE) 3: Seeing Steve and Michelle -- the two have teamed one scientists and techies and patients at a summit in New Orleans to further technology to improve ALS patients' lives.

One person who is using his platform to push for a cure is "The Cake Boss," Buddy Valastro. He announced on his show his mom was diagnosed with ALS.

(BEGIN VIDEO CLIP)

BUDDY VALASTRO, THE CAKE BOSS HOST: She's not doing that well.

(END VIDEOTAPE)

MALVEAUX: Buddy joins us next live after the break.

(COMMERCIAL BREAK)

MALVEAUX: All this week I'm talking about ALS, a fatal disease that kills off motor cells rapidly taking away people's abilities to move, eat or breathe. It affects some 30,000 people in the United States.

But Buddy Valastro, "The Cake Boss," knows first hand. His mother has ALS and he is bringing attention to it on his own reality show.

(BEGIN VIDEO CLIP)

VALASTRO: She's not doing that well.

UNIDENTIFIED FEMALE: You think a cup with a handle on the side is easier to hold?

VALASTRO: Mama got diagnosed with ALS. And it's a horrible, horrible disease.

(END VIDEO CLIP)

MALVEAUX: "Cake Boss," Buddy Valastro, joins us.

And, Buddy, it's hard to watch. I know your pain. I know your experience. My mother has ALS as well. I love your show. It's a lot of fun. You're a no-nonsense tough guy from Hoboken but you make these beautiful, beautiful cakes that we see there, something passed down through your family. Give us a sense now of how you and your mom are coping with this disease.

VALASTRO: Well, I'm really excited to be on, Suzanne, because I really want to bring attention or awareness to ALS and let people know what a horrible disease it is.

And, you know, my mom was diagnosed in 2011. She's probably had it since 2009, and, you know, it's a very tough disease, to see somebody full of energy and somebody who was full of life just, you know, little by little have everything taken away from them. It's really tough. But I got to tell you, when I watched the video of your mom, the thing that inspired me was that her will to fight and you know, have the support of the family. That's kind of what my mom does. My mom comes to the bakery every single day. She sings actually. Our favorite song is "I Will Survive." And what an ironic song. But it was before that, before ALS. And every day she comes in and belts it out for the whole bakery, so she's really such a strong person. And her will to live and survive is just amazing. And you know, that's what I got from watching the video of your mom, you know, and the family, and I think there's such a good connection. But I just really want people to know what this disease is about.

(CROSSTALK)

VALASTRO: And, you know, we need to raise awareness to help potentially have a cure for this.

MALVEAUX: Absolutely, Buddy. You're preaching to the choir here. I love that song, "I Will Survive." That's one of our favorites as well.

You talk about the will to live and obviously it is, you can see it in your mom there, and see in your featured show. Right now there isn't a cure. And the clinical trial is very much in the beginning stages. My mom, it happened so quickly, she was no longer even eligible to participate in these trials. And I know that your mom is taking a really bold step. Tell us what she's doing. I understand she's actually going to Israel to participate in a trial.

VALASTRO: Yes, she's actually going to Israel to -- they took stem cells from her brother, who has a perfect DNA match to her, and they grow the cells and they inject it into her. We opted to do this because this cannot hurt her in any way, shape or form. Is it going to help her? We pray and hope, but at least it can't hurt her, so you know, she's actually going next week. She was there a couple months ago. They extracted the cells from my uncle's bone marrow. Now they're growing it. And I truly believe that the future of science and medicine is going to be able to cure this disease. But right now, all's we can do is try to raise awareness to get money so that we can do more research because, at the end of the day -- I'll never forget the day my mom was diagnosed. I was in the room with her. It was me, her and the doctor, and we had suspicions that it could be ALS but we weren't sure. And when the doctor said, you know, you have ALS, and she said to the doctor, what are we going to do, how are we going to treat this, and the doctor kind of like shrugged her shoulders and was like, we make you comfortable. I don't know if my mother -- I know what that meant. If you get cancer or other things all right we'll try to treat it and give you chemo. ALS, it's like, you know, there's nothing we can really do for you.

MALVEAUX: Yes.

VALASTRO: Other than, you know, these trials at the end of the day, the condition that a lot of these patients become, you got nothing to lose, you know what I'm trying to say?

MALVEAUX: Yes.

VALASTRO: You might as well try again.

MALVEAUX: I understand exactly what you're saying, Buddy. One of the things I would just say to you and your family, we wish your mom the very best, your whole family the very best. Just to take advantage of those little moments, the things we somehow take for granted just to be able to hear her voice, to have those conversations while you still can and to take those trips when you still can.

Buddy, thank you for your courage and for your strength and for your mom's courage and strength, and bringing attention to this. And of course, you and I are going to keep in touch because I know it's a really difficult journey and I think we can be there for each other.

Thank you, Buddy.

VALASTRO: Absolutely. And the same goes to you. Thank you for you and your family sharing your story. God bless.

MALVEAUX: God bless. Thanks, Buddy.

"The Cake Boss" airs Monday nights, 9:00 p.m. eastern on TLC. It's a great show.

If you'd like to read more about ALS and how you can push for a cure, go to CNN.com/impactyourworld or malveauxmission.org.

The founder of Life Fitness, Augie Miato (ph), had it all, a wonderful wife, a booming business and his health. But then he was diagnosed with ALS. And, of course, he is paralyzed. Well, we hear his amazing story of survival, how he uses a machine to speak, how he has used his fame to raise millions of dollars for a cure. That is tomorrow. We'll look also at how close scientists are to finding a cure, the research behind this. See "Augie's Story" tomorrow at 1:00 p.m. eastern, and learn about the research and the efforts to diagnose this disease and a search for a cure.

(COMMERCIAL BREAK)

MALVEAUX: This just in. President Obama just touched down in Jacksonville, Florida, where he's going to be delivering another economic speech in about an hour or so. This time, in a warehouse in Jacksonville's port authority. The president plans to push for new infrastructure projects as well as investments. This is going to be the third consecutive speech on the economy as he tries to change focus and to allow people to listen to that message.

This just in. We have another Anthony Weiner poll. This one shows his favorable rating has taken a big hit. That's right. The NBC4/"Wall Street Journal"/Marist poll shows New Yorkers' favorable opinion of Weiner is down to 30 percent, down from 52 percent last month. These are the latest poll numbers since the latest sexting admissions by Weiner.

Talk about this. This is a close call. Watch what almost happens to this Wisconsin State Trooper. Unbelievable. You can see this. This 18-wheeler slams into the police cruiser just as he's walking away. The crash captured on the dash cam, you see it there. Thankfully, he managed to escape. He was not injured.

And former President George H.W. Bush sporting a new look for a good cause. Look at this. Bush 41 shaving his head in solidarity with this young cancer patient. He's the son of one of his Secret Service agents who is battling leukemia. The former president joined his entire security detail in showing his support for this 2 year old. His name is Patrick. He also made a donation to Patrick's treatment fund. The president and wife, Barbara, lost a daughter to leukemia at the age of 4.

Next Thursday, CNN Films takes an intimate look at President Nixon. Discover the footage the FBI locked away for 40 years. "Our Nixon" airs next Thursday at 9:00 p.m. eastern.

And he spilled the beans on the NSA's surveillance techniques. Congress responded by keeping the controversial data collecting program. Coming up, how the White House is responding and a look at what Edward Snowden's next move could be.

But first, this weekend on "The Next List," how one man is using his knowledge of the ocean to save lives.

(BEGIN VIDEOTAPE)

DR. SANJAY GUPTA, CNN CHIEF MEDICAL CORRESPONDENT: This week on "The Next List," we talk to Archie Kalapa, chief of ocean safety for the Hawaiian island of Maui. Kalapa pioneered the use of jet skis for ocean rescues 12 years ago, and he's been saving lives ever since.

ARCHIE KALAPA, CHIEF OF OCEAN SAFETY, MAUI, HAWAII: For us, the ship is way offshore, and it's all about response time. How quickly can we respond from point "A" to point "B" or the safe zone to the impact zone where the waves are breaking and back out of that?

UNIDENTIFIED MALE: Archie, he definitely puts others ahead of himself when it comes to game time where he has to save somebody.

UNIDENTIFIED FEMALE: I started screaming help, help, and the next thing I know, this wonderful man has a little floatation device and was dragging us through the waves.

GUPTA: Today, Kalapa is innovating new rescue techniques and equipment and training others to use them, including the Navy SEALS. Kalapa is also an elite athlete with the skill to surf the giant waves of Maui.

Join us Saturday, 2:00 p.m. eastern, "The Next List."

(END VIDEOTAPE)

(COMMERCIAL BREAK)

MALVEAUX: Now to a case that has strained relations between the United States and Russia for the past month. Of course, we're talking about the saga of Edward Snowden. The NSA leaker has been holed up in the transit area of Moscow's International Airport since arriving back on June 23rd. Yesterday, the Russian media reported that Snowden received a document that would have allowed him to leave the airport and enter the country, but his lawyer says they actually he has not received the paperwork. So last week, Snowden wrote to the Russian government asking for temporary asylum. If that happens, Snowden would be able to live in Russia and even travel abroad.

Brianna Keilar joins us from the White House.

What's the White House reaction to all of this, this request now to leave?

BRIANNA KEILAR, CNN WHITE HOUSE CORRESPONDENT: Well, a couple of things, Suzanne. First off, they're not happy, as you can imagine, but one of the things that we heard from Jay Carney is they want clarification from the Russian government on exactly what the status of Edward Snowden is. And we also heard from the spokesperson for the State Department that, as far as we know, the highest level communication -- and this is pretty high -- is that Secretary of State John Kerry has called his counterpart, Russian foreign minister, Sergei Lavrov, and he's communicated to him, not only wanting to know the status but saying if Snowden does leave the Moscow airport, the U.S. would find this very disappointing. I know to the average person this sounds pretty mild, but once you put that through the diplo-speak filter, it sort of says the U.S. will be "very" upset if he is able to go beyond the Moscow airport.

MALVEAUX: Got to translate the diplo-speak a little there, Brianna.

Wednesday -- tell us about this -- just yesterday, the House narrowly defeated the proposal to sharply restrict the NSA's phone surveillance program. This, of course, was the program exposed by Snowden. Does Congress actually believe that program is really that good?

KEILAR: I think there are a number of key Democrats and Republicans and members of the Obama administration who feel that it's necessary. That's what you saw.

Now, when you look at the House vote, what's fascinating about it, one, it was a narrow defeat, 217-205. But there were also very strange bedfellows voting to try to defeat this. A lot of liberal Democrats joined by Republicans. You don't often see that. But they were not happy, obviously, by this program. I think this is really it, Suzanne. They've registered their discontent. It was a narrow defeat, but we're not expecting the Senate to take this up. The White House certainly was not on board with getting rid of this -- I guess, the ability of the NSA.

Let me tell you what the bill would have done. It would have said, if you're going to get phone records from Americans, it has to be related to a specific investigation. It can't be done in a blanket way. So, for now, that continues to be at the disposal of the NSA.

MALVEAUX: Brianna, thanks, we appreciate that. Remember, Julian Assange, the founder of WikiLeaks, the online group that published hundreds of thousands of secret U.S. military documents, he says he is now running for a seat in the Australian Senate. He says he has informed an official WikiLeaks political party to help his candidacy. We're not sure exactly how that campaign would work. Assange remains holed up in the Ecuadorian assembly in London where he's been given asylum to avoid extradition to Sweden on sexual assault charges.

That's it for me. Have a wonderful afternoon.

Brooke Baldwin takes it from here.