80s are the New 40s! CMTA Leaders Beverly and Frank Wurzel are Unstoppable

The CMTA has evolved and grown exponentially over the past 20 years, and if you have not been around to witness the transformation, you need to listen to the voices of longtime CMTA volunteers and branch leaders Beverly and Frank Wurzel. 

Beverly and Frank Wurzel have spent the past 20 years of their lives spreading CMT awareness and raising funds for CMTA STAR research. Their raw determination, motivation and never-say-never attitudes are not only commendable but also incredibly awe-inspiring.  

As Beverly walks you through her time at CMTA, Frank keeps everyone on their toes and in stitches. Married for 65 years, these two longtime CMTA advocates truly care about the people they serve, so much so, they consider their fellow CMTA members as second family. Bev is a connector of people; Frank is a committed supporter. Together, they are leaving a legacy of love, philanthropy and caring.  

CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, interviews with the CMTA community, including board members, branch leaders, and CMTA team members. Have a story you’d like to share? Write to info@cmtausa.org. You may be our next guest on the new CMT 4 ME podcast! For more information on the CMTA, please visit our website: cmtausa.org

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Transcript

Chris: What's the background?

LizO: What are you doing back there? What do you mean you wanna give background? Are you controlling this podcast now?

Beverly: No.

Frank: No.

LizzO: Oh, you wanna do a background image, so...

Chris: No, she's got something to say. Hold on. Go ahead.

Beverly: [0:00:20.9] ____ of what I have to say.

Frank: Go ahead. Say it.

Beverly: It's how I got involved? That kind of thing.

Chris: Oh, is everything okay?

Beverly: Yeah.

Frank: Yeah.

Beverly: Everything is fine. I wrote down a couple notes.

Chris: Oh.

Beverly: So I'm good.

Chris: Okay.

LizzO: Beverly's taking charge of the podcast today.

Chris: She takes charge of everything. I know that.

LizzO: Everything.

Frank: You're right. Correct.

Chris: She said...

LizzO: Rein her in, Frank. If she gets to...

Chris: I know.

Frank: She's got the hammer. [laughter]

Chris: Actually I'm nervous to do this podcast now. Like she's...

Beverly: I don't blame you.

Chris: It's like Judge Judy over there with that hammer and mallet.

Beverly: I went to school with her.

Frank: She went to school with Judge Judy.

Beverly: I graduated with her.

Chris: Did you go to school with Judge Judy?

Beverly: Yes, I did. And she graduated the same year as I did.

Chris: There's a slight resemblance there when you pick that hammer up. [laughter]

Beverly: I know. Other people have told that. [laughter]

LizzO: I feel nervous now. [laughter]

Chris: Maybe that's it. We're gonna introduce the Judge and Frank. [laughter] Okay. So Frank it sounds like we can hear you guys well. Right. So that's good.

LizzO: Yesterday there was like a sound, but I don't hear it today, so that's good.

Chris: That's good.

Frank: I paid my electric bill.

Beverly: Wait, wait, wait.

Chris: And so keep in mind during this, at any time right it all gets edited. So if we have to say, "Oh, could you repeat that? Or Geez, I didn't hear what you said." Or some strange sound shows up. We'll just say that and then it'll get... It will be edited out anyways and we'll start over.

LizzO: Hold on, hold on. But if we put it on the raw and unedited version on YouTube, it will not be edited. So...

Chris: Right. But we're not putting that, right? I think we don't do that anymore so.

LizzO: Yeah. No, I've continued to do that.

Frank: On our release? [laughter]

LizzO: No.

Chris: There I'm hearing that beep again. You hear it, Elizabeth?

LizzO: Yeah.

Beverly: I can and there's nothing I can do about that.

Chris: That's okay.

LizzO: What is it?

Beverly: It's okay, because...

LizzO: No, what is it?

Frank: We don't know.

Beverly: We have... Yeah.

Frank: It's a mouse that's running our computer.

Beverly: We have a laptop which has the screen.

Chris: Yeah.

Beverly: We have an old, old desktop that doesn't have a camera. So we hook up a wire into the laptop. 'Cause I can't hear, I don't hear well.

Chris: Oh. Got it.

Beverly: I have CMT ears.

Chris: Well, we need you to hear for this podcast. So.

Beverly: Well, it's a lot of my hearing, so...

Chris: No, it's good.

LizzO: You can just talk over...

Chris: Okay. And so you guys we'll get through this and then you're heading to New York after this?

Beverly: Perhaps... Yeah. Not today, tomorrow.

Chris: Okay. Tomorrow. Okay.

Beverly: This will drain me for the day.

Chris: Okay. [laughter]

LizzO: Miss Positive.

Chris: Here we go. All right, Elizabeth, we're recording. Hamburger.

LizzO: Ha, ha, ha. [laughter]

Chris: All right. You ready?

LizzO: Yeah.

Chris: 1, 2, 3. Hello everyone. This is Chris and LizzO.

LizzO: We are a brother, sister team.

Chris: On behalf of the Charcot-Marie-Tooth Association aka CMTA, we are coming at you.

LizzO: Coming at you from coast to coast. I live in California and Chris lives in Vermont.

Chris: And this is another fantastic episode of our famous podcast. Name what, LizzO?

LizzO: CMTA 4 Me. So you got...

Chris: That's right, folks.

LizzO: CMT, let me say it, let me say it. CMT 4 ME.

Chris: She's so bossy.

LizzO: I know.

Chris: But let me continue. This is a comprehensive podcast covering all aspects of CMT, the voice of individuals living with CMT, their challenges, and more importantly, their inspirational stories. We will also cover research updates, fundraising, interviews with the CMTA community, board members, branch leaders, CMTA leaders and overall, an opportunity to spread awareness through the eyes of those with CMT.

LizzO: Hey Chris, do you know what month this is for the CMTA?

Chris: It's the ChrisO month.

LizzO: No, we haven't got that far yet. It's CMT Awareness Month.

Chris: Oh, I love it.

LizzO: Happy CMT awareness month.

Chris: I love it. Love it. And what does that mean, LizzO?

LizzO: It means that this is a time that we spread awareness and that the CMTA, they have all these things going on in the month of September, but this isn't gonna come out till October. But I just thought I'd wish you a happy awareness month.

Chris: Oh, thank you very much.

LizzO: Yeah.

Chris: Thank you. So LizzO, let me tell you, I'm happy to say we pulled off the 9th annual Cycle 4 CMT signature in Vermont, blah, signature event in Vermont. And let me tell you, boy, am I tired? What about you?

LizzO: You're tired. I just, I went to Vermont, I came back, I'm exhausted. And now we're doing this San Francisco Cycle 4 CMT and talk about tired. I have swag all over the place. I'm exhausted. And if I can make it through Saturday, I'm good.

Chris: Hey, listen LizzO, it sounds like you are complaining. And let me tell you, our next guest would be appalled to hear you complaining.

LizzO: You know what? You're kind of right. I am complaining, [chuckle] and these guys wouldn't even complain.

Chris: I know. I know.

LizzO: Right.

Chris: And listeners, in support of today's guests, I am gonna take us to New York and New Jersey. What a unique breed these two are, LizzO. And let me ask you, are you familiar with the language of New Yorkers?

LizzO: No. And how...

Chris: How they talk and their accents?

LizzO: No, but how could I be? Our mom, Bev, never let me go to New York City. I don't think I even went to New York City 'til I was like 45, because she said as soon as I got off that plane, I'd get shot. [laughter] So who'd wanna go there?

Chris: Right. So here we go, LizzO. Did you have your coffee today?

LizzO: Oh my gosh. I'm glad you don't speak like that.

Chris: Make sure you drink your water, sis. [laughter] And I was on the train and shvitzing. You know what that means?

LizzO: What is shvitzing? No. What are you talking about.

Chris: Sweating. [laughter] The people from Brooklyn say, instead of sweating, they say shvitzing. [laughter] And LizzO, in terms of this, you got beef with me, LizzO? You got beef with me, eh?

LizzO: Yeah. Actually I do have beef with you. [laughter]

Chris: Now here's something really good that I'm wondering if our guest speakers say when they're fundraising and asking for money. When our guest speakers say, "We need to find a cure and need your shmoney." [laughter]

LizzO: Do they really say that.

Chris: It's not money, but it's shmoney. That's what I heard people in Brooklyn say.

LizzO: Actually, I'm glad I've never been to New York. I think it sounds like a whole different language. [laughter]

Chris: Right. Okay. I'm honoring our guest by speaking their language. So I'll hand it over to you, LizzO.

LizzO: Well, I, I do wanna say that these people live in Fort Lee, New Jersey, and last night I was on the internet and I went to Google Maps and I looked at their apartment, I saw a view from the window I looked across. So I feel like I've actually been to their house and it's... You can actually look out the window over the Hudson River into New York City. It's pretty cool. Yeah.

Chris: Well, that's cool. So who do we have today, LizzO? Who are our guests?

LizzO: Chris, these two are amazing. They're really long time friends. I've known them for like 20 years, it seems like that. Yeah, about 20 years. And they're CMT advocates and these two have been married for 60 years. That's how old I'm gonna be in December. 60 years. So that's a long time.

Chris: And I've been married 27. Wow.

LizzO: We don't care.

Chris: Yeah. So let me talk more about my myself first. [laughter]

LizzO: It's about our guests. Okay.

Chris: Oh yeah.

LizzO: Let's refocus.

Chris: Keep me on track. [laughter]

LizzO: Today we have Beverly and Frank Wurzel. Beverly was a CMTA branch leader, and she started around 2005 and is to date the longest standing branch leader with her husband, Frank. And she's even won Volunteer of the Year Award. I mean, she is amazing, and we're gonna hear from both of them very soon. But Frank is always by her side. She's a determined fundraiser, a natural people person, and a fierce advocate for people with CMT. And Frank, he always makes people laugh. He just makes people laugh. He's funny. They make a great pair. What a couple, Beverly and Frank Wurzel.

Chris: These two have a lot to say folks, and they have a great approach to fundraising, strong beliefs, which drive them every day in everything they do. A commitment to the CMTA, finding a cure for CMT, and are definitely not a pair who sit on the sidelines. They are engaged. So welcome, Frank. Welcome, Bev.

Beverly: Thank you. Thank you so much for having us.

Chris: You got it. So exciting. I had so much fun yesterday during our pre-interview, just getting to know you folks. And I'll tell you, left teary-eyed, emotional, excited, ready to knock down doors and keep moving on and do what we can.

LizzO: She's an inspiration. She's an inspiration. So Bev and Frank, let's start from the beginning for our listeners. Tell us a little bit about yourself and your relationship to CMT and CMTA.

Beverly: Well, so I probably knew something. I knew something was wrong at about 35 years old. I lost my lateral instability in one foot and I said, "Something is going on," but went to a shoemaker and he put a lateral wedge on the shoes and I was good for years after that, each time I got a new pair of sneakers, I'd have that lateral wedge put on. And it wasn't until years later that I developed foot drop many, many years later. And I said, "No, there's something definitely wrong here." Finally diagnosed with CMT. And at about that time, I found out that there were actually groups that met that... They were, they were called support groups.

LizzO: That's right. Our support groups. Remember when they were called support and action groups? [laughter]

Beverly: And it was very far, the one that was closest to my house was at least an hour away. But I did reach out to the branch leader at the time. We're talking 2003, 2002, 2003.

LizzO: Why did it take you so long? So when were you diagnosed?

Beverly: I was I was diagnosed just a couple, few years earlier than that, when I developed foot drop.

LizzO: Okay. And so why did it take you a while to reach out to a branch?

Beverly: I didn't wanna be with... I didn't know what to expect from a branch. I didn't know what to expect from a going to a meeting, what type of people I'd meet. I was already reluctant. It was a branch leader that called me over and over, "Please come join us." And I said, "No, I'm not ready for this yet. Maybe, maybe next time." And she was just, she could not have been kinder. And she said, "Please come." She said, "You will feel very comfortable, I promise." I said, "Fine." I said... You know, it took me a while. It took me about a year. I said, But don't expect me to say anything. Frank and I finally went and I was just blown away. I mean, I didn't stop talking the whole time. [laughter] It was... Everybody was just so nice. And, and it was just regular people...

Frank: [0:11:55.0] ____ cake and coffee.

Chris: And cake. Right. Frank went for the cake and coffee, but still supporting her along the way.

Beverly: I mean, these people just happened to have CMT, but they were just ordinary folk. And I've just met so many people on this journey. It was just wonderful going to the meetings. And it was many years later, a couple... Probably two or three years later, that the group leader said, "Can't do this anymore. I need somebody to take over." And I looked at Frank and I said, "I don't know. I think I'm ready for this." And he said, "I'll help you." We sort of looked at each other's eyes and we knew we would do this together. And so I barely could raised my hand and I said, "Fine." I said, "I will be the new group... The new branch leader, or support group leader." So it was... There was very little known. It was at that, that was the year 2005. And very little was known about CMT at the time. There was very little research going on. I continued to go to the meetings and it was time many, many years later that they started to... Things started to happen and things started to progress. And there were conferences, branch leader conferences at the time, and I went to every one of them. And I met some wonderful, wonderful people. I met some researchers and physicians, many of which I still speak to. And on a... On on a personal level, on a first name basis. So...

LizzO: Bev, a lot of branch leaders burn out very quickly. I mean, it's a lot of work. It really is a lot of work. But you keep going. What's your secret?

Beverly: It was a lot of work. And I asked for help. Originally, I said, Anybody in the room gonna write this letter or make this phone call. And they would for a short period of time, and then they would just stop. And I said to Frank, "Frank, you gotta help me on this." I said, "Because I'm not giving up. I'm not giving this up." This means just... This is wonderful. This is a wonderful opportunity to stay engaged.

Frank: And then after a couple of shots of Scotch, we was ready to go. [laughter]

LizzO: Is that what you did before the branch meetings? You had your Scotch and you went together and then you could tolerate it? [laughter]

Frank: That's right.

Beverly: They were... They were so many people that they just, we had a... We have lost a lot of people in all these years because of our age. I'm 80 years old and it's...

Frank: You told me you were 50.

Beverly: I'm not.

LizzO: She doesn't look a day over 50.

Chris: Not at all.

LizzO: What keeps you going, Bev? What keeps you guys going?

Beverly: The fact that I was getting worse. The fact that my... That I just wanted to leave... I wanted to do something positive. I wanted to, it was important for me to have a purpose. This was the purpose. My children were grown. They didn't need us as much. It was just gonna be part of my legacy and part of Frank's legacy. And that was... And it made me feel relevant. It made me feel, and it also, it made me feel like I was doing something for the greater good. And it just took my mind off me. And that was a good part of why I speak to the people so often, and I call people so often 'cause it takes my mind off me and my challenges because, it's just... It's, and it's an awesome feeling. It's just absolutely awesome.

Chris: It's just so great to hear your approach to giving back and your commitment in keeping the branch going and how it makes you feel being engaged in the CMTA. I know during the pre-interview, you said a few things, one of which was, you feel like the CMTA is your family, right? It's become that component of your life between... With you and Frank.

Beverly: Absolutely. It's... I cannot begin to tell you the friends I've made along the way. And if I reach out to anybody, I will get a phone call back immediately. And I have been in touch with people throughout the year. It's just not at a meeting or at an event. It's... And I've seen the progress. I think that's also a tremendous motivation. The advancements in research and the project. You just wanna give and you wanna... It wasn't until years after I became a branch leader that we started doing some fundraising. And we collected $2,000 that first time and then $3,000 the year after. And but we had a very supportive group and I was just determined to make a difference.

Chris: Yeah. And so tell us on the fundraising aspect, you bring up a really good point in terms of the fundraising, and I believe you said you'd have luncheons and I... You even told a story, I know you're an aggressive fundraiser, which I really love. Tell us, our listeners, I think there was a story about someone wanting to donate $25.

Beverly: Oh. [laughter]

Chris: And you had a great approach. And you live by that. Don't take no for an answer, right?

Beverly: No, I will not take no for an answer. It's just that important to me because of the advancements and because I have seen it personally. Because in the 20 years, almost 20 years that I'm doing this, there has been so much progress. So why not continue that?

LizzO: So tell us that story, Bev. Tell us that story.

Beverly: We were at a group meeting. I took a branch leader meeting and we had quite a crowd that day. I don't remember if we had a guest speaker or not. And I was doing some fundraising right then and there, and I said, "We're collecting money." I said, "We need... I need your money. I need you guys to write out a check for me." [laughter]

Frank: He came... He came in late.

Beverly: And one guy came in late and I... And he came over to me and he said, "I hear you're collecting money." I said, "Yeah, actually I am. So he said, How about if I give you $25?" And I said, "I don't know about that. I'm not so sure about that. Could you do better?" And he doubled it.

Chris: That's...

LizzO: That's awesome.

Beverly: But I've gotten to know the people, which I think is the very important part of my fundraising.

LizzO: Yeah.

Beverly: I know the people. I know who to ask. I know who will give me, I know who will say yes, and I know who will say no.

Chris: And I'll tell you, you have an approach and not to cut you off there, but it makes me think on your approach to fundraising, which can also benefit people listening to the podcast. Right. I think you and Frank, firmly believe in that, you reflect in not only fundraising, but business and how you conduct your life. But that personal touch.

Beverly: Very important...

Chris: Tell us about that.

Frank: That's the selling point.

Chris: It is.

Beverly: It is the most important part because anybody that walked in and we would go around the room at a meeting and, "Tell me about yourself. Tell me, would you like to share the kind of CMT you have if, and tell me about your family." And I would write down notes and I would know the names of their children and their husbands and the type of CMT. And if they didn't come to a meeting, I would always call, "I haven't seen you. You didn't come. Are you okay?"

LizzO: That's right.

Beverly: Very important to reach out. Very important to make the phone calls. That's what got me started to go to my first meeting because Kaye, that was the branch leader's name, "Call me over and over, come to the meeting. We miss you, we wanna meet you." So I just...

LizzO: You replicated that, right? You replicated that.

Beverly: Absolutely. Absolutely.

LizzO: Now, does Frank take any of the phone calls? Does he call people too or?

Beverly: He doesn't, he goes over all my notes and he adds a lot to them because I'm always... I don't think the day goes by that I don't write a letter or make a phone call or answer a phone call...

Frank: Or find a loophole. That's what I look for, is a loophole. [laughter]

Beverly: He's even sat on the computer to go to companies and to big companies and to see if he can give... Find out about grants and where other moneys can be collected. But in the years that I've been doing the fundraising, we've collected quite a bit of money.

Chris: That's so great.

Beverly: I don't... We're always... When they do the count at the end, I think in January, of how well we do, we're always on that top tier.

Chris: That's great. And I think you referenced, LizzO, these guys over their years. I think have raised well over a quarter of a million dollars in their efforts, which is just unbelievable. And the other thing I think about, Bev is that people newly engaged with CMT or even a year or two, they do always question about the progress of research. And it's so awesome to hear you say just the progress you have seen over these years, which keeps you motivated for fundraising and doing what you're doing today.

Beverly: I encourage everyone listening to this podcast today to take my word for the fact that progress is happening. It's happening for the 20 years that I've been around and I have seen it personally. And I encourage them to... People who live with CMT, people who have family members who have CMT, people who have friends who have CMT, get involved. It's very gratifying. It really truly is gratifying. Get involved, go to a branch meeting, become a co-leader, participate in a fundraising effort. It doesn't have to be...

Frank: Whatever you can do, do.

LizzO: There's so many... Bev, there are so many people out there.

Chris: So hold... Let me just say one more thing. So Bev, as you can find out, this is very typical of LizzO. You're on a path of trying to get your point and then she takes you down another path and now you gotta remember where you left off and go back.

LizzO: Yeah. And now by now we've all forgotten.

Chris: I do the same thing Frank does for you. I look for loopholes and then I bring things back for LizzO.

Beverly: Frank is an intricate part of what I do because I couldn't do it without him.

LizzO: I could do without Chris though I think. [laughter]

Chris: All right LizzO, you were saying something.

LizzO: Bev, what do you say to those people that just go, "Oh, I don't wanna get engaged. I don't wanna do anything."

Chris: "There's nothing I can do."

LizzO: "There's nothing I can do that would make a difference."

Beverly: But there is.

LizzO: What would you say to those people?

Frank: Once you get them into, at a meeting, that's the selling point. Get them involved no matter what. Let them get a cup of coffee for somebody who can't use the handle on the coffee machine. Get involved and that's how they say, "Hey, we did something, maybe we can do a little better."

Beverly: And show you care.

Frank: And show you care.

Beverly: And you do. Just take...

Frank: Everybody's got a problem.

Chris: Yeah.

Frank: There is a problem with everybody, that you gonna help.

Beverly: It's just very... It's become very, very important to Frank and myself to continue this effort. Frank and I feel that we're just starting. This is just the beginning.

Chris: It's so great.

LizzO: You know what? If we had had Beverly with Gina, they would make such a good team as our top fundraisers. They'd both be in development.

Frank: Newspapers now.

Beverly: Wouldn't be the same.

LizzO: I bet they have the same approach.

Beverly: There's a lot of what I've known by the way, a lot. Because she has a very aggressive nature about her as far as fundraising and she's quite awesome at what she does.

Frank: You gotta be in line. She's in line.

Beverly: She's amazing.

Chris: She is. LizzO, one thing I'd like to talk about is and maybe you can lead us there, is just Bev as you're speaking, it's never just Bev, it's Bev and Frank or Frank and Bev and in everything you do and I think it's great. This is the dynamic duo, LizzO.

LizzO: It's not only together now, but it's breakfast, lunch, dinner. They're always together doing everything.

Frank: You should see us when we buy a car, the dealer gives us money to get out. [laughter]

Beverly: This is true. We do everything together. Frank, there are some things I can't do or I have challenges doing now.

LizzO: Tell us what Frank does for you, for your CMT and then I wanna know what you do for Frank.

Chris: Yeah. When you get up, what's Frank do for you?

Beverly: He puts my shoes. Well, I take my shower, it takes an hour because it's challenging. It just takes an hour. And Frank puts my shoes and my braces on for me. Because I can't bend. It's just too hard. The braces are too cumbersome and blah, blah, blah. He helps me with that.

Frank: And I make adjustments to some of the braces.

Beverly: Yeah.

Chris: You do?

Beverly: I just got new ones and they come out of Albany, New York. And I'm very pleased with them but they're very cumbersome and they had some tweaks and I haven't gotten back and Frank is very handy. So he's made some adjustments for me. But we spend a lot of time together when he's not running and doing something with some of his customers. We have our meals together. Every one of them. I wait for...

Chris: Don't you guys walk as well?

Frank: Yes.

Beverly: Yes. We walk every single day. Every single day.

Chris: And if you ever felt like, "Ah, I don't wanna walk today."

Beverly: No. Not gonna happen because Frank says, "Yes. We actually... We are." And perhaps...

Chris: He says you are [chuckle]

Beverly: Hold his arm and we go for our walk. I had a bad mishap about three years ago. I didn't wanna wait for Frank. He was out doing some job somewhere. And I walked alone and I actually fell and I broke my jaw.

LizzO: Ugh.

Beverly: So that set me back. It set me back as far as my mind... I wasn't comfortable. I was frightened.

LizzO: Didn't they have to wire up your whole jaw and everything?

Beverly: They did. Could you imagine?

LizzO: No. I don't know. How did you not talk? Could you still talk?

Beverly: How did I not talk is correct.

Frank: They tied it up.

Beverly: It was wired shut. I broke it in three places. And I would...

[vocalization]

Beverly: Do that a lot. You know that I was crying lot. [laughter] But...

Frank: She had liquid breakfast, lunch and dinner.

Chris: Yeah. Was that scotch, Frank?

Frank: No.

Chris: Okay. Okay. [laughter]

Beverly: But we do everything together. Like I said we have not missed a branch show, media or conference. We do everything together.

LizzO: And so Bev, what do you do for Frank? I know he does a lot for you but you also give to Frank.

Beverly: He's done a lot for me and since COVID came in, has started and has yet to say goodbye to us. Frank has been doing the shopping. So because it's hard. It's just hard for me to do things now.

Chris: Right.

Beverly: My hands are somewhat affected, but it's my feet really that...

LizzO: But you still cook and everything, right?

Beverly: Absolutely. That's very important. Nutrition has always been an important part of my life. So, yeah. I cook three meals a day. I make our breakfast together, we have lunch and I'm planning what to have for dinner. And I think one of the first things Frank says to me in the morning is, "What's for breakfast?"

Chris: Yeah.

Beverly: And we start that way. So we proceed from there. But there's always some CMT-related activity or call or these days, what I'm doing mostly is I'm concentrating more on 1A. So...

Chris: On 1A?

Beverly: On 1A. It's what I have. It's what my struggles are. And I wanna see as much research done as I can go into 1A. So right now, at this moment, I am waiting for a 1A match. If that should come this year. And then I will go bonkers. I will make my phone calls, I will write my letters and I will get the word out.

LizzO: So tell us about your family, Bev. We are talking about 1A. You say, you know what kind of CMT you have. There's a 50-50 chance of passing it on. Do you have children? Do they have CMT? Do you have grandchildren? Do they have CMT? And if so, how do you feel about that?

Beverly: So Frank and I now have three great grandchildren with one on the way. Yeah. So...

Chris: Great. Congrats.

Beverly: Three great... Yeah. Thank you. I have three children and only one has CMT. But he's doing quite well. The other two do not. My grandchild... My grand... One grandchild, my son's child does not seem to present in with any issues at this point. So we are just kind of waiting. What I decided to do, because my brother has CMT, is to go to have a blood test done. And it was done for 1A because Mike Shy led me in that direction and says, "I think I have 1A. I'll just get tested for that." And so I got a hold of Shawna at that time. Shawna Feely and who arranged to have this done from my insurance at the time. And then I got tested and I got a report back and I sent the letter to my son and I sent the letter to my brother and I said that if anybody else presents in the family, whether it be a child or grandchild, this is what they have. So it came back in. Absolutely included, this is what she has.

Chris: Yeah.

Beverly: [0:30:43.6] ____. So, that's really my story. But...

LizzO: Does your brother... Do... Are you still in contact with your brother?

Frank: Yes.

Beverly: Oh, yes.

Chris: Yes. Does he have children?

Beverly: He does. And he has three children. And of his three children, he has one that has CMT.

LizzO: That's interesting.

Beverly: Very wild. He's starting... He's three years younger than me and he's starting... It's been very slow. The progression in my case, it's been slow but it's definitely there now. And it definitely limits my ability to do things. And I worry a lot, Elizabeth...

Frank: That's her middle name, Worry.

Chris: Worry?

Frank: Yeah.

Beverly: I do.

LizzO: Bev Worry Wurzel? That's hard to say.

Beverly: I worry about the what ifs, what's gonna happen when, and all the things I don't... It's very hard for me to live in the moment. And so... Which I have to learn to do.

LizzO: Frank, are you... Do you live in the moment or are you a worrier too? Are you both worried?

Frank: I don't worry. Whatever this is, that's it.

Beverly: No. Hardly. He's totally the other way. Totally. We'll deal with what we have to deal with when we have to deal with it.

Chris: And is that frustrating, Bev or do you... Is that...

Beverly: No and what it does it's really...

Chris: That great advice to you.

Beverly: It's... I want an answer. I wanna know.

Chris: Right.

Beverly: You know what. And I'm not and I'm... We'll worry about it. We'll deal with it. You'll figure it out. So...

Frank: There is always a solution.

Beverly: He... If I doesn't dwell on it, but I get very, very frustrated and I do worry.

Frank: That's why her blood pressure's so high.

Beverly: We're not... [laughter]

Chris: Are we gonna talk about Frank now?

LizzO: Yeah, we're gonna... Doesn't he have some surgery coming up or something? [laughter] Oh, we wanna talk about that?

[overlapping conversation]

Chris: Listen, while we are on this. Something I wanted to ask. And so this is... So Frank, if you could change one thing about Beverly, what would it be? And then I'm gonna ask that a similar question to Bev.

Frank: Her nerves.

Chris: Nerves.

Frank: Nerves. She's so over... Over the top. She's always nervous.

Chris: Okay.

LizzO: Oh.

Frank: And that bothers me a lot.

LizzO: Okay. Interesting. I thought you meant like her CMT nerves.

Frank: No.

Beverly: Not at all.

Frank: I knew when I married her, she had something. [laughter]

Chris: Yes.

Beverly: His mother said...

Frank: From Europe.

Beverly: His mother said, "She's walking funny, I don't know." [laughter]

Chris: Right. So you wish she wasn't as nervous where then you try to play the role of don't worry and things will be okay.

Beverly: Right.

Chris: Right. So it's kind of a good exchange there. And I guess Bev, what's the one thing you would change about Frank after all these years if you could?

Beverly: He's... We're part of a set.

Chris: Yep.

Beverly: And we're... It's just, we're not... One without the other is just inconceivable. And we just... He's a tremendous help to me.

LizzO: I know, but what's the one thing you would change? What's the one thing, it could be his ears or something? I don't know.

Beverly: It has to be his work. He still talks about work, about going to Manhattan and seeing his customers. And I said, "I need your help. I need your help, I need your help."

Chris: Sure.

LizzO: Okay.

Beverly: I get somewhat, if he's not here [0:34:17.1] ____ in for the length at time, well, how do I get that from the top cabinet? Or how do I... Well, you gotta cut this or whatever it may be. So he's starting to slow down a little bit. Not because he wants to. Because I want to, and so...

Chris: Yeah. Yeah.

Beverly: So...

Chris: Oh, you guys are a solid team, and I think you said it very well. The team doesn't function in the absence of one person, right? And you both have strengths and weaknesses, and you guys have tackled so many issues together. And you feed off of one another. And I just think it's fantastic how you guys operate. Right? Like your success in fundraising, Bev wouldn't be as successful if Frank wasn't involved. So it's just an awesome team.

Beverly: No, it wouldn't be. But I don't... I just, encourage everybody to do something. It's...

Chris: Yeah.

Beverly: It wouldn't... How do you not do something? How do you not... Again, this is just part of our legacy. It's just part of it, but it's a integral part of it. You couldn't get me to go to my first branch meeting...

Chris: I know.

Beverly: It took me several years to say, finally I'll go. I will go.

LizzO: So Bev, I have a question for You.

Chris: See, Bev, she interrupted you but that's fine.

LizzO: I know, but I've been waiting and I don't know what the right time is, but now's the right time. I want you to think about this first, but you wake up in the morning, CMT is not an easy disease. It's not an easy disease. And I want to know if you get discouraged? How do you feel about having a son with CMT? And do you feel bad about that? How do you feel about grandkids with CMT? Do you get emotional about that? It's hard. It's a hard disease.

Beverly: I sometimes I feel very sorry for myself. I realize, I have friends who are my age, and then instead some of them are losing their spouses. Others are struggling with other disabilities of... Or other illnesses. And in my head I know, "Oh, I'm glad for what I have, thank God it could be worse." But I realize, but I also know how challenging it is for me and how much over the years, how much of a change there has... It's been slow. It's been this, but it's been progressive. And I get angry because I... And I... Why can't I go to the supermarket? Why is it so difficult for me to get out of the house, to walk with the braces? Do I take the cane? Do I not take the cane? I'm angry at my dependence, I think. If I have to say one thing, I'm angry at my dependence on Frank. But on the same flip of the coin, Frank is dependent on me for so many things. So I think it equals itself out a little bit. He does so much for me, but I do for him as well. So it's...

Chris: That's fantastic... It's a just a great answer. And one thing that I recall you both said yesterday, is also some of your motivation in getting engaged is it keeps your mind off of all those things you just talked about. Or you can sit there and just worry about all of that. And you staying engaged or going for walks or running the branch and fundraising keeps your mind off of that.

Beverly: It's an incredible feeling, Chris, when... It's the most gratifying feeling I've said, I said this at the beginning of the podcast, when somebody calls up and they don't know what to do, and they've just had been diagnosed themselves or had a child recently been diagnosed, and they don't know where to turn. And for me to say, "Well, I have some thoughts, perhaps I can be of help to you, perhaps... " And we can spend... And I've helped so many people along that way. I've told 'em about these centers of excellence. I've told them about some of the doctors, some of the researchers that I know and to feel hopeful. And that's what I'm feeling. I feel, because of all the years that I've been doing this, I feel very, very hopeful for the future. Not so much to stop my progression, but not so much that I will benefit by the research. But research is definitely on target. It's definitely... It's advanced so much in the 20 years, and I am hopeful. When somebody who has a 13-year-old child calls me, I say, "There's no doubt in my mind, this child is gonna be fine." Because by the time that this child needs any type of intervention, there's gonna be treatment. There'll be a cure, there'll be no issues. Get it out of your head, that child is gonna be fine."

Chris: Yeah.

Beverly: And there's no doubt in my mind about that.

Chris: Yep.

Frank: When you think about your grandchildren, your great-grandchildren, you're like, "They're gonna be fine. Because I've been involved and I have helped with the research, and the CMTA is doing a great job with researching. We will have something for 1A."

Beverly: That's it. None of my grandchildren have it as far as I know.

Frank: They're little babies.

Beverly: They're little babies. They're a little [0:39:48.6] ____ toss, so it's hard to know but... And my son that has it, is very mildly effective. He's a professional at Manhattan, a CPA at Manhattan. He's doing remarkably well. He walks a lot. He exercises a lot. So he's doing fine. I'm not concerned about him at all. We don't talk about that much. He's always... He's one of the first people I call for donation. He always comes through. [laughter]

LizzO: Beverly, I remember that's changed. I remember talking to you and Johan really related to your story. My son Johan, and I remember, Howard, your son, had some back issues and things like that. And did he go through a tough time or?

Beverly: No, he has some issues related to CMT that I know are related to CMT, but he was a young boy. He's never been tested by the way.

LizzO: Okay.

Beverly: So, when he was a young boy, he had a little bit of a quiver, so his hand...

LizzO: Yeah. That shaking. Yeah.

[overlapping conversation]

Beverly: Just a little bit. And I took him to the doctor and he said, "I don't know, doesn't look like very much, forget about it." So we forgot about it.

LizzO: Okay.

Beverly: But he functions just well, he doesn't use braces, he doesn't use any adaptive equipment whatsoever. And my brother doesn't either and of their entire family, I'm presenting the worst symptoms right now, but I'm older also. My brother's younger than me. So, like I say, it's been progressive, but it's been slow. A slow progress.

LizzO: You have three kids. And did you treat Howard any differently or what was your attitude towards that?

Frank: Every one of them? [chuckle]

Beverly: No, absolutely not.

LizzO: No? So just... That's interesting 'cause people don't know what to do when there's one that has CMT and the others, and you just went on like, "This is what we got. You just gotta do the thing."

Beverly: [0:41:49.5] ____ a bit differently knowing I have CMT, he actually... There's nothing wrong with you. There's nothing that you can't do.

Chris: Yeah.

Beverly: Just stop complaining. Just... He doesn't act as if I have any type of disability whatsoever.

Frank: She gets mad when you ask her to get a job. [chuckle]

Chris: She has one. She's a branch leader.

Frank: I know, but... [laughter]

Beverly: I am, and...

Frank: Just party four hours in a day.

Beverly: It's getting harder and harder to keep the branch afloat because we've lost so many people 'cause we're an older group.

LizzO: Yeah.

Chris: Yep.

Beverly: And, but we have a... We brought a boy, we have now.

Frank: Modern IT fellow.

Beverly: We now have an IT guy who is...

Frank: Terrific.

Beverly: He's terrific and he's done all the computer work, all the IT work, all the... I find that we're doing since COVID, I have not had an in-person meeting since then.

Chris: Yeah.

Beverly: And I find... Because it's more difficult to people to get to it.

Chris: It is.

Beverly: It's just so hard to get to the car and to go over the bridge and cross the river and all, and to get to the meetings. I find that we could get 30 or 40 people on a Zoom call.

LizzO: Yeah.

Beverly: If I have an inspirational speaker. And we do quite well.

LizzO: And bravo for doing the technology.

Chris: Exactly.

LizzO: And getting someone to help you out because its not easy.

Chris: You have to make it easy for people to attend.

Beverly: But it just blows my mind when somebody has CMT and just sits on the sideline and says, "Hmm, I'm not gonna do anything." Why? I don't understand this, that whole thought process.

Chris: Yeah. And Bev, it's making me think, and I know the answer to this question, but do you feel like the CMTA community or those with CMT would definitely benefit if we had more individuals like you and Frank taking action? And is there a need for that?

Frank: I think there was a need.

Beverly: I'll tell you about the need. I live in Fort Lee, New Jersey. That's at the tip of the Hudson River. Behind us going west, going north. So we have New York State at that point. We go into New York State. There is not one branch in any county of New York State till we get up to Albany.

Chris: And that's crazy. Think of the population.

Beverly: And hundreds and hundreds of miles away. And I have... There was a time when we were doing our luncheons, pre-COVID that I did get a group from Rockwood County, who was very supportive of us. This is another county back in New York, but that sort of fizzed out. And it just... I don't understand why people don't wanna do that. It's really... It's a wonderful feeling of accomplishment of doing, of participating.

Frank: Helping others.

LizzO: Yeah.

Beverly: It just makes you...

Frank: It doesn't cost anything. No.

Beverly: Makes you feel good.

Frank: Bottom line. It doesn't cost...

LizzO: Well it does kind of cost something 'cause when I go to Bev's group, she's gonna ask me for $50 instead of $25. But that's worth it I think, right?

[overlapping conversation]

LizzO: It costs me. It's definitely gonna cost me if I go over there.

Chris: You're right, you're... Yeah, there's...

Frank: It's $100 now.

Chris: Oh, it's $100 now?

LizzO: Oh. Yeah. [laughter]

Chris: There is no expense.

LizzO: Inflation.

Chris: And I guess I agree with you. It's... This is a... This is... Anybody listening to this podcast, right? You have a really strong message, right? You can get engaged or you can sit on the sidelines, but get involved.

Beverly: Get involved, it's something. It doesn't have to be... You don't need to be a branch leader. Go participate in a fundraising or...

LizzO: That's right.

Beverly: Anything, do anything. Make a phone call, call up somebody with CMT and say, "Can I come over and visit? Would you like me to go shopping for you? Would you like to go shopping with me?" It doesn't have to be a tremendous, and just ask, don't be shy to ask people for money. Don't be shy to ask people. All they can say is no.

Frank: And then ask week later, again.

Beverly: And then ask... [laughter]

Chris: Keep asking.

LizzO: It's persistence.

Beverly: Absolutely. And you gave a figure. You set a figure of about a $250,000. Yeah. I don't think that's terribly far from what it's been. Yeah.

Chris: It's probably more.

LizzO: Probably more.

Beverly: So. And we have one member who's a... I'm giving monthly. Monthly. So we don't have that many members in it anymore. But I have a list of my...

LizzO: That's right.

Beverly: Fundraising people. And like I said, right now I'm concentrating more on 1A and I'm waiting for a match. I do super well on matches. And it's more of an... More of a...

Frank: You get two for one.

Beverly: You get two for one.

Chris: Exactly.

Beverly: You're gonna gimme $100, I'm gonna have $200 in my hand. So help me. Help me, don't say no to me. Help me out. So...

LizzO: I wanna thank you both for your enthusiasm, and your motivation, and your inspirational attitudes. I mean, I've known you both for a long time and I love you. And it's... You are like family to me. Even Chris, when Johan was looking for a job in HR, they made a appointment with Johan and helped Johan out, and gave him ideas and they were looking around. That's dedication, that's friendship, that's family.

Chris: It is.

Beverly: It's the CMTA and the people. Elizabeth, and Gina, and so many others have become family to me. It's a second family, it's somebody I know who will get on the phone and say, "What's wrong? I haven't heard from you", Or, "What can I do? What can I do to help you?" Many of the people I don't know, the newcomers, it's... There were so few and now there are so many. So...

Chris: And you guys do an unbelievable job.

Beverly: We need more volunteers, yeah. And...

Chris: It's so great. Just so great to have you as part of the community. And I hope now...

LizzO: I'm so glad you get to meet them.

Chris: I hope now I'm part of your family, now that I've gotten to.

LizzO: Well, don't forget the next match for 1A Bev, you gotta call Chris and ask him for a donation. [laughter] And have him double it.

Beverly: Don't challenge me, Chris, on that one, please. [laughter]

Chris: I know I will lose.

Beverly: I think...

Chris: Oh my goodness.

LizzO: I think [0:48:41.7] ____.

LizzO: Well, I think we have to wrap it up. Time has gone by so quickly. I wanna thank you both for being guests on our podcast. I...

Chris: So great.

LizzO: So honored.

Beverly: Thank you so much. Thank you both for doing what you do, and for your podcast, and for inviting us. Very much appreciate it.

LizzO: You're welcome.

Chris: You guys are rock stars. It's so great. That was awesome, LizzO.

LizzO: God, I'd love those two.

Chris: Me too. Now we have to go visit them. So.

LizzO: Yeah.

Frank: Not a problem.

LizzO: I don't know, I might get shot, so I don't know. New Jersey's fine.

Frank: This week, it's knives, no guns.

Chris: What was that Frank?

Frank: This week it's knives not guns.

Chris: Knives, not guns. [laughter] So LizzO, if someone wants to learn more about CMT and/or to donate to our cause, where should they go?

LizzO: Well, www.cmtausa.org. There's so much information on the website, you'll be blown away.

Chris: And you got it folks. Go to the site, save this as a bookmark. Ongoing information daily. And LizzO, as we've heard from our guests as well, it takes a lot of money to fund research in order to find a cure for CMT. If someone was so inclined to generously donate to our cause, please go to cmta.usa.org.

LizzO: No, it's not cmta dot...

Chris: Did I say that correctly?

LizzO: Let me do the website.

Chris: Excuse me. Oh yeah.

LizzO: Cmtausa.org.

Chris: Okay. Good point.

LizzO: Okay, that's all right.

Chris: I know this.

LizzO: And to our listeners, do you have a good story. Would you like to be a guest on our podcast CMT 4 Me? Well, write to us. We have a different email that you can write to us now, or go write to us and it's cmt4mepodcast@gmail.com. CMT4mepodcast@gmail.com. Pitch your idea, tell us about you, and we'd love to hear from you.

Chris: We wanna hear. And LizzO reviews are so important for promoting this podcast.

LizzO: Absolutely.

Chris: And where does someone go who wants to write a review?

LizzO: Yeah, so if you listen on Apple Podcast, you can leave your review right there. And we've gotten some great review so keep them coming.

Chris: You got it. And good luck on your Cycle 4 CMT Ride in San Francisco coming up this weekend, LizzO. You, and Johan, and a bunch of folks on the West Coast doing the ride.

LizzO: Yeah, we're so excited. Jean is coming out and John Svan's gonna be here, people from Stanford and UCSF, and we're planning on a great Saturday. So thank you. Thank you so much.

Chris: And I'm glad that you are shipping out swag to the participants and not this year. And you got all that swag outta my garage, which was fantastic, it's been there for eight plus years.

LizzO: Oh, my God. I don't know how I got suckered into this, but I brought four bags back full of Cycle 4 CMT swag. I felt bad for you at the time but now I'm like, "Oh my goodness. What am I gonna do with all this swag?" We don't have basements here in California, but we'll deal with it. [chuckle]

Chris: All right, LizzO, you have a good one. Love you.

LizzO: I love you too, Chris.

Chris: Oh. And let's finish strong. Here we go. Ready, LizzO?

LizzO: Yeah, I'm ready. I'm ready.

Chris: One, two, three. Start spreading the news.

LizzO: I'm leaving today.

Chris: Want to be a part of it, New York. New York.

LizzO: New York. New York. Those vagabond shoes.

Chris: Oh my goodness. They're longing to stray.

LizzO: Right through the very heart of it.

Chris: New York. New York.

LizzO: New York. New York. [laughter]

Chris: All right, we definitely don't have a music career, folks. Take care everybody. Till next time. Adios. [laughter]

LizzO: Awesome podcast. Bye. [laughter] All right, I'm gonna stop the recording.
 

 

 

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