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Scleroderma Research Foundation · The iHeart SoCal Show

• 0:00
  Speaker 1: Welcome back to I Heart SoCal. My name is EJ,
• 0:02
  Speaker 1: and on the phone with me, I have Kelly Rizzo. Kelly,
• 0:05
  Speaker 1: thank you so much for joining us.
• 0:06
  Speaker 2: Oh, thank you for having me.
• 0:08
  Speaker 3: Of course, of course.
• 0:09
  Speaker 1: So for people that may not know about Scalarderma, I
• 0:14
  Speaker 1: feel like I just butchered it.
• 0:15
  Speaker 3: How do you officially pronounce that?
• 0:17
  Speaker 2: Scalarderma. scleroderma. A lot of people have trouble with it.
• 0:20
  Speaker 2: It's not just you.
• 0:21
  Speaker 1: Thank you so much. Can you run it down? What
• 0:24
  Speaker 1: is it and why is raising awareness so important?
• 0:26
  Speaker 2: Yeah. So this is a disease that my late husband, Bob,
• 0:31
  Speaker 2: Bob Saget, his sister passed away from in the early nineties.
• 0:35
  Speaker 2: And actually he started doing benefits for scleroderma even before
• 0:40
  Speaker 2: his sister was diagnosed with it, which is crazy. And
• 0:43
  Speaker 2: then it just so happened that His sister also got
• 0:46
  Speaker 2: this incredibly rare and incredibly painful and debilitating disease, and
• 0:51
  Speaker 2: she passed away soon after. So after that, Bob dedicated
• 0:56
  Speaker 2: literally the rest of his life to fighting for this
• 0:59
  Speaker 2: cause and trying to find a cure and put an
• 1:01
  Speaker 2: end to scleroderma. And technically it means the hardening of
• 1:08
  Speaker 2: the skin, scleroderma, but what it does is it actually
• 1:13
  Speaker 2: can affect all of the organs in the body. And
• 1:17
  Speaker 2: if you have systemic scleroderma, which can... you know, ultimately
• 1:21
  Speaker 2: affect the lungs and other organs that could be lethal.
• 1:24
  Speaker 2: And so when people have this disease, it can be
• 1:27
  Speaker 2: very disfiguring. It can be very painful and ultimately can
• 1:31
  Speaker 2: be fatal. But the Scleroderma Research Foundation has done so
• 1:35
  Speaker 2: much work over the past 30 plus years to get
• 1:39
  Speaker 2: closer and closer to finding a cure. And they've also
• 1:42
  Speaker 2: had incredible treatments and they're really helping people you know,
• 1:45
  Speaker 2: live longer with the disease, to find treatments for the disease,
• 1:50
  Speaker 2: and we're getting close to a cure.
• 1:51
  Speaker 3: Fingers crossed, fingers crossed. You know what's interesting?
• 1:53
  Speaker 1: I feel like it's not one of those diseases that's
• 1:55
  Speaker 1: out in the forefront, so a lot of people don't
• 1:57
  Speaker 1: necessarily know about it. Do you have any of the symptoms?
• 2:00
  Speaker 1: That comes with scleroderma.
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  Speaker 2: So when I think some of the first symptoms that
• 2:05
  Speaker 2: people notice is the a lot of issues with your extremities.
• 2:11
  Speaker 2: So in your fingers, you start to have like pain
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  Speaker 2: in your fingers. And because it is an autoimmune disorder,
• 2:17
  Speaker 2: it does resemble some of the symptoms of like Raynaud's arthritis.
• 2:22
  Speaker 2: So a lot of people who have scleroderma also have Raynaud's.
• 2:25
  Speaker 2: And so people do go to doctors who help with
• 2:29
  Speaker 2: arthritis or who are immunologists or, sorry, autoimmune doctors to
• 2:36
  Speaker 2: really try to get to the bottom of this. And
• 2:38
  Speaker 2: scleroderma is a little bit harder to diagnose. Obviously, it's
• 2:41
  Speaker 2: gotten easier over the years, but those are kind of
• 2:45
  Speaker 2: the symptoms that you first notice is things that are
• 2:48
  Speaker 2: a little autoimmune or that start in your extremities or
• 2:51
  Speaker 2: that feel kind of... like arthritis.
• 2:53
  Speaker 1: So you remained involved with the Scleroderma Research Foundation after
• 2:56
  Speaker 1: Bob's passing. What made you want to continue that part
• 2:59
  Speaker 1: of his legacy?
• 3:00
  Speaker 2: So Bob obviously did so much for the cause and
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  Speaker 2: helped raise millions and millions of dollars over the years.
• 3:07
  Speaker 2: And I knew that obviously I'd not be able to
• 3:10
  Speaker 2: do anywhere near what Bob has done for the cause.
• 3:13
  Speaker 2: But one of the things that he did was over
• 3:15
  Speaker 2: the years, besides host all the events, was he also
• 3:18
  Speaker 2: kind of booked all the comedians because the event is
• 3:21
  Speaker 2: called Cool Comedy Hot Cuisine. So there's two big components.
• 3:25
  Speaker 2: One is the comedy side, and then one is the
• 3:27
  Speaker 2: cuisine side. And the cuisine is always done by the brilliant,
• 3:31
  Speaker 2: incredible celebrity chef, Susan Feniger. And then Bob would always
• 3:35
  Speaker 2: bring in all of his friends and fellow comics to
• 3:39
  Speaker 2: perform comedy. And... with Bob's passing, that was kind of
• 3:44
  Speaker 2: one of the big issues is, you know, how are
• 3:46
  Speaker 2: we going to get the talent to continue to come
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  Speaker 2: to these events? And I had known that since being
• 3:53
  Speaker 2: with Bob all these years, I fostered so many wonderful
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  Speaker 2: relationships with his comedian friends. And I mean, how easy
• 4:00
  Speaker 2: of an ask is that to go to these incredible
• 4:03
  Speaker 2: comedians who loved Bob and just say, can you continue
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  Speaker 2: to do me a solid here, do Bob a favor
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  Speaker 2: still and come perform at this incredible event for an
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  Speaker 2: amazing cause. And in the last four plus years that
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  Speaker 2: I've been doing this, it's been such an amazing job
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  Speaker 2: to have because everyone wants to still show up for
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  Speaker 2: Bob and for this amazing cause. So it's been actually
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  Speaker 2: such a pleasure and a treat to be able to
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  Speaker 2: reach out to all these comics on Bob's behalf.
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  Speaker 1: Kelly, can I just say that that speaks a lot
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  Speaker 1: to who Bob was as a person? The fact that
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  Speaker 1: he is no longer here, you know, physically, you know,
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  Speaker 1: he's here spiritually. The fact that people still want to
• 4:41
  Speaker 1: show up for him and do him favors, I said,
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  Speaker 1: I think speaks volumes on how he was as a person.
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  Speaker 2: Oh, well, thank you for saying that. And it's so true.
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  Speaker 2: I mean, he was just so selfless and so thoughtful
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  Speaker 2: and he would truly give the shirt off his back
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  Speaker 2: for anybody, but he went so above and beyond for
• 5:02
  Speaker 2: over 30 years for this cause. And he said, he goes,
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  Speaker 2: I will be fighting for this until the day I die.
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  Speaker 2: And then he even said, and one of the, actually
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  Speaker 2: it was his last ever TV interview that he did
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  Speaker 2: He said, you know what, even after I'm gone, which
• 5:17
  Speaker 2: was interesting because I think he passed away like a
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  Speaker 2: week after that. And so it basically showed that even
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  Speaker 2: after he's gone, he's still going to be fighting this cause.
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  Speaker 2: And anything that I can do is just. it's, it's
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  Speaker 2: really become like the honor of my life to, you know,
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  Speaker 2: perpetuate his legacy, even in the smallest way possible, because
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  Speaker 2: I know he does it on his own in so
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  Speaker 2: many ways and I'll never even, you know, do 1%
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  Speaker 2: of what he did for the foundation, but any way
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  Speaker 2: that I can help has just been such a massive
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  Speaker 2: honor for me.
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  Speaker 1: Not to overstep, but I can just hear the love
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  Speaker 1: that you have for him and your voice when you
• 5:53
  Speaker 1: speak about him.
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  Speaker 3: So my condolences still. Thank you.
• 5:57
  Speaker 1: Let's talk about Cool Comedy Hot Cuisine. Tell me about
• 6:00
  Speaker 1: the event.
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  Speaker 2: So I'm so excited for this year. You know, every
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  Speaker 2: year we switch off. We have one year in L.A.
• 6:06
  Speaker 2: and one year in New York. But the L.A. ones
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  Speaker 2: are just always so special because, you know, Bob loved
• 6:13
  Speaker 2: these L.A. events. Also, it's at the Beverly Wilshire on
• 6:15
  Speaker 2: October 13th. And we always have an incredible lineup of
• 6:20
  Speaker 2: amazing comedians, but then also, as I said, amazing food
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  Speaker 2: by chef Susan Feniger. But this year, we have Fortune Feimster,
• 6:30
  Speaker 2: Matt Friend, Ron Funches, Jay Pharoah, and Lisa Ann Walter
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  Speaker 2: are all going to be doing stand-up and performing. The
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  Speaker 2: host is Jeff Ross, who is such an incredible friend
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  Speaker 2: to the cause, and he has been hosting these events
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  Speaker 2: every single year since Bob passed. And just for him
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  Speaker 2: to take this on, it's just, I know Bob is
• 6:52
  Speaker 2: just smiling so big up there, just loving his friend
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  Speaker 2: Jeff because this is so kind of Jeff to do this.
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  Speaker 2: And then this year we have a very special award
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  Speaker 2: going to John Stamos, which is the Bob Saget. I know,
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  Speaker 2: which is... I mean, you know, John is Bob's brother,
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  Speaker 2: and he's always been such an advocate for this cause
• 7:13
  Speaker 2: over the years, too. And every year now since Bob passed,
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  Speaker 2: we've been giving out the Bob Saget Legacy Award each
• 7:18
  Speaker 2: year to somebody who has been so supportive of the cause.
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  Speaker 2: And this year goes to John Stamos. So John is
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  Speaker 2: getting the Bob Saget Legacy Award. And then Seth Green,
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  Speaker 2: one of Bob's other best friends and one of my
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  Speaker 2: dear friends, is going to be hosting the auction along with,
• 7:35
  Speaker 2: you know, the professional auctioneer, of course. And then Howie
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  Speaker 2: Mandel is our special guest presenter who will be presenting
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  Speaker 2: the Bob Saget Legacy Award to John Stamos. So it's
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  Speaker 2: one heck of a lineup. It's an amazing lineup. It's
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  Speaker 2: going to be an incredible night for an amazing, amazing cause.
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  Speaker 1: Kelly, it sounds like this event has so many one-two
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  Speaker 1: punches and it just sounds so good to be a
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  Speaker 1: part of. I want to ask, what made you decide
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  Speaker 1: on John Stamos this year?
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  Speaker 2: Oh, gosh, it's kind of a no brainer. He's just
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  Speaker 2: been he's ever since I've known him and ever since
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  Speaker 2: I've known Bob, he's come to every event. He's always
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  Speaker 2: so supportive. He talks about the cause whenever he can.
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  Speaker 2: And he was just such a true, wonderful friend to Bob.
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  Speaker 2: And as I said, such a supporter of the SRF
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  Speaker 2: over the years. And so this one was just kind
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  Speaker 2: of a no brainer.
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  Speaker 3: Can anyone get tickets to this event?
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  Speaker 2: Yes, of course. So srfcure.org is the website, and you
• 8:35
  Speaker 2: can get tickets. You can sponsor tables. You can become
• 8:38
  Speaker 2: an event sponsor. There's a ton of ways to get
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  Speaker 2: involved or to donate or just, as I said, get
• 8:45
  Speaker 2: a ticket and come see this incredible show with the
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  Speaker 2: most delicious, amazing, you know, Chef prepared cuisine and then
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  Speaker 2: just have an incredible night supporting a great cause. And
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  Speaker 2: then hopefully our whole goal is that we never want
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  Speaker 2: to do these events ever again. Correct. Because it means
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  Speaker 2: that we found a cure.
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  Speaker 1: What if you can't go to the event and you
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  Speaker 1: still want to help out?
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  Speaker 3: How can people help out?
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  Speaker 2: Well... I mean, of course, any type of donation is
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  Speaker 2: so beneficial and so helpful. And you have that website,
• 9:19
  Speaker 2: of course. And then, you know, we're just sharing anything
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  Speaker 2: about it. We are going to have so many incredible
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  Speaker 2: photos and videos that are going to come out from
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  Speaker 2: the event. So, you know, if anyone even just wants
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  Speaker 2: to spread the word or, you know, share the good
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  Speaker 2: news about us trying to find a cure for scleroderma,
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  Speaker 2: that would be so appreciated.
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  Speaker 3: What do you wish more people understood about scleroderma?
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  Speaker 2: I don't think people understand truly how painful this disease
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  Speaker 2: can be. Some people do very, very well with it,
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  Speaker 2: and they have a version that is more, I would say, tolerable.
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  Speaker 2: They can live with it. It is not one of
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  Speaker 2: the fatal types, but then if you do have one
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  Speaker 2: that is more life-threatening, it can be, I mean, obviously life-threatening,
• 10:06
  Speaker 2: but also just so painful in the way it can
• 10:09
  Speaker 2: disfigure your life. your skin, your hands, your face. It's
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  Speaker 2: such a painful, awful disease. And it's just so heartbreaking
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  Speaker 2: to see people who are suffering with it. And that's
• 10:21
  Speaker 2: the thing. If you don't know about this disease, you
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  Speaker 2: don't really understand why how much it affects you and
• 10:28
  Speaker 2: your loved ones. But then whenever people come to these
• 10:31
  Speaker 2: events for the first time and they see the videos
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  Speaker 2: of the people who are suffering with this, even children,
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  Speaker 2: and it's mainly women in the prime of their lives
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  Speaker 2: who are affected by this, but it can affect men.
• 10:43
  Speaker 2: It can affect children. And really anybody... could be affected.
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  Speaker 2: So it's not just a small niche group that's affected here.
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  Speaker 2: This really could be anybody. But when you see what
• 10:56
  Speaker 2: these people are going through, you just want to do
• 10:59
  Speaker 2: anything you can because you're like, we have to find
• 11:01
  Speaker 2: a cure for this. We can't allow this disease to continue.
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  Speaker 2: So that's why this event is just so important. And
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  Speaker 2: every year it's been so, so helpful because at least
• 11:12
  Speaker 2: a million, sometimes even Two or more are raised for
• 11:15
  Speaker 2: each of these events, and all of the money goes
• 11:17
  Speaker 2: directly to research. That's what's so incredible about the Scleroderma
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  Speaker 2: Research Foundation is that all the money goes to finding
• 11:25
  Speaker 2: a cure.
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  Speaker 3: SRFcure.org. SRFcure.org.
• 11:29
  Speaker 1: Do you want to take a second and talk about
• 11:31
  Speaker 1: Comfort Club? Oh, yes.
• 11:33
  Speaker 2: Oh, that'd be lovely. So with Comfort Club, that is
• 11:38
  Speaker 2: the grief support group that I created that is now
• 11:44
  Speaker 2: hosted on Substack. So if you go to my Substack,
• 11:47
  Speaker 2: you can find out all about my Comfort Club. But
• 11:50
  Speaker 2: it's just this really incredible, cozy community place. That is
• 11:55
  Speaker 2: just it's been so wonderful for people to come together,
• 11:58
  Speaker 2: support each other. I have live meetups. I have live
• 12:02
  Speaker 2: cooking sessions, live meetups every month. And it's just for
• 12:06
  Speaker 2: the last two years now been this incredible support community
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  Speaker 2: that is just been such an honor to host.
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  Speaker 3: What's interesting is how I lost my brother two years ago.
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  Speaker 2: Right.
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  Speaker 3: And I feel like it is such still a difficult process.
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  Speaker 3: to deal with.
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  Speaker 1: I know sometimes you can feel alone with everything that's
• 12:24
  Speaker 1: going on around you. So I really enjoy that you
• 12:27
  Speaker 1: are doing this and supporting meetups and just having a community.
• 12:31
  Speaker 3: Of people that know the pain that you are going through.
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  Speaker 2: Oh, I'm so sorry for your loss, CJ. And thank
• 12:36
  Speaker 2: you for sharing that. And yeah, people really do feel alone.
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  Speaker 2: But also what I wanted to do was create a
• 12:43
  Speaker 2: community that also wasn't so heavy. Like a lot of
• 12:47
  Speaker 2: people in acute grief, they need something that's maybe more
• 12:51
  Speaker 2: of an actual, you know, like led by therapists or
• 12:54
  Speaker 2: a real grief support group that meets them where they're
• 12:57
  Speaker 2: at at that time. Mm-hmm. But since I'm not a
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  Speaker 2: therapist and I'm not, you know, a grief coach, I'm
• 13:03
  Speaker 2: just me, a person who's gone through this myself. And
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  Speaker 2: I just wanted to have a community that can actually
• 13:09
  Speaker 2: support people, but also brings a little light to it,
• 13:12
  Speaker 2: brings a little levity to it. That's not so heavy.
• 13:15
  Speaker 2: It's just more of like a comforting, cozy community that's
• 13:17
  Speaker 2: just a little bit lighter and where we can laugh
• 13:20
  Speaker 2: and have a nice time together and have fun together,
• 13:22
  Speaker 2: but still then talk about the hard times also.
• 13:24
  Speaker 1: Well, what's weird about it is that I feel like
• 13:26
  Speaker 1: people don't know how to talk to you anymore. And
• 13:28
  Speaker 1: it's like, just talk. We can sit in silence. We
• 13:31
  Speaker 1: can talk about how we want to go eat pizza.
• 13:33
  Speaker 1: It doesn't necessarily have to be. doom and gloom, but
• 13:35
  Speaker 1: I feel like a lot of times people just don't
• 13:37
  Speaker 1: know what to say. And that's a little frustrating sometimes.
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  Speaker 2: Yeah. And I think one of the biggest lessons that
• 13:41
  Speaker 2: you can learn on one thing that I've learned about this,
• 13:44
  Speaker 2: and especially even more recently, because I've had even more
• 13:48
  Speaker 2: friends lose people since I've lost Bob, of course, and
• 13:53
  Speaker 2: being on the other side of it now and trying
• 13:55
  Speaker 2: to help other people who are grieving and just talk
• 13:58
  Speaker 2: about their person, say their name, talk about them, bring
• 14:02
  Speaker 2: them up. And people are always scared of like, well,
• 14:05
  Speaker 2: what if I say the wrong thing? Or I don't
• 14:06
  Speaker 2: know what to say. So I'm just not going to
• 14:08
  Speaker 2: say anything. And the best thing you can do is
• 14:11
  Speaker 2: even if you screw it up, who cares? Like even
• 14:13
  Speaker 2: if you say something that's a little bit wrong or
• 14:15
  Speaker 2: maybe off, it's better than saying nothing. And people want
• 14:19
  Speaker 2: to hear their loved one's name. And I know that
• 14:21
  Speaker 2: maybe doesn't go for everybody. Everyone's different. But the vast
• 14:25
  Speaker 2: majority of people you know, for me, if somebody is like,
• 14:28
  Speaker 2: let's talk about Bob, like that makes me happy. That
• 14:30
  Speaker 2: doesn't make me sad. Like I might, I still might
• 14:34
  Speaker 2: cry if I talk about him, but that's okay.
• 14:36
  Speaker 1: Yeah.
• 14:37
  Speaker 2: Yeah.
• 14:37
  Speaker 3: It's that love with no place to go. Yeah.
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  Speaker 2: And so that would be my biggest lesson is people
• 14:42
  Speaker 2: are like, what's one thing you can tell people to
• 14:44
  Speaker 2: help somebody who's going through grief or had just gone
• 14:47
  Speaker 2: through a loss, like talk about their person, just bring
• 14:50
  Speaker 2: them up, say their name, talk about them.
• 14:51
  Speaker 3: Absolutely.
• 14:52
  Speaker 1: It was an honor to have you on. Thank you
• 14:54
  Speaker 1: so much. for coming on and chatting with us. Don't
• 14:57
  Speaker 1: forget the website, srfcure.org, srfcure.org, if you want tickets to
• 15:03
  Speaker 1: the event, or maybe you just want to donate to
• 15:05
  Speaker 1: make sure that we can find a cure.
• 15:07
  Speaker 3: Kelly Rizzo, thank you so much for joining us.
• 15:09
  Speaker 2: Oh, thank you so much for having me. I really
• 15:11
  Speaker 2: appreciate it, AJ.