Seven Million People Are Living with Alzheimer’s Disease in the US. 80,000 in CT alone & twice as many unpaid family members and friends are providing their care. But the money being raised is making a difference.
Nobody signs up for a brain disorder that gets worse over time. Alzheimer’s is a gradual decline in memory, thinking, behavior and social skills. These changes completely affect somebody’s ability to function.
The bad news is the number of people with Alzheimer’s is increasing, but the good news is there are real advancements in treatment. These advancements are being made possible by the continued donations to this cause.
There’s a big gala benefit coming up in April in Greenwich CT (where I do my live show from) that hopes to help families in this dementia journey.
I invited Tim & Kelly Helstein the Chairs of The Alzheimer’s Association upcoming ‘Celebrating Hope Gala’ being held April 26th at the Delamar Greenwich Harbor in in Greenwich CT, to explain where the money raised goes to. They’ve been caregivers and know how hard it is.
Tim whose mom passed from Alzheimer’s shared:
“My mother’s life ended way too soon and no not only is it something that Kelly and I are doing to honor my mother through this, but also to help educate and care and prevent the future generations from having to go through what my family, what my father, what Kelly and I have had to go through. You know, we spend our days telling stories to our kids who love it. In the morning, they always say, you know, tell us a new story about Nanny. Tell us a story that was really funny.”
“It’s because she can’t share it herself. So really what Celebrating Hope is about is not only bringing awareness and celebrating all those who have moved on because of Alzheimer’s, but also celebrating the hope that we can change this, that tomorrow is a new day, that tomorrow the sun rises and there will be what we call a white flower, the first person who has overcome and has been cured from Alzheimer’s. And science has been doing so much and the doctors and the FDA, and so we’re excited to see what tomorrow does hold but it’s going to be a gathering for all of us to really celebrate that hope.”
Kelly Helstein, Tim’s wife shared:
“Like Tim said you know we have three young kids and they are missing their grandmother so much and that’s a good background story about why we’re involved, but also I want to point out that it’s just a great way to honor those who are struggling with the disease. You know, that’s the first reason we stepped into this role, but also it’s giving us a platform to raise awareness and funds to support research and almost just empower others who are going through the same experience just to link arm in arm and say, us too, and just share our story with them and they share it with others and just create awareness all around.”
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research.
Kristen Cusato, the Director of Communication for the Alzheimer’s Association Connecticut Chapter & New England Research Champion also joined the show. She discussed the risk factors associated with Alzheimer’s disease and emphasized the importance of lifestyle interventions to reduce the risk.
Kristin also shared there are real advancements in treatment and that the availability of these treatments can change the course of the disease.
The powerful CT chapter offers 24/7 support for the public, healthcare professionals and caregivers. This chapter has influenced public policy changes and provided support to Alzheimer’s and dementia research in the hope of finding a cure.
There are many fundraising events held around the country to support Alzheimer’s research and awareness. And the money is really making a difference. I encourage you to participate and support Alzheimer’s research and awareness efforts.
The 11th Annual ‘Celebrating Hope Gala’ is being held in Greenwich, CT April 26th.
Good education about this horrible disease and the progress being made in it’s treatment is shared this podcast of our live conversation on The Debbie Nigro Show. If you’d rather read than listen the transcript is below.
The Debbie Nigro Show on WGCH Radio. If you want to catch the show it airs Weekdays 11-12 noon ET in the NY/CT area on 1490 on the dial. But you can listen from anywhere, just hit the ‘Listen Live’ button on WGCH.com. Catch the podcasts of interviews after on DebbieNigro.com
AUDIO TRANSCRIPT:
0:00:00
And now, back to the Debbie Nigro Show.
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Think about it, there must be a higher love Down in the heart or hidden in the stars above Without it, life is a wasted time Look inside your heart and I’ll look inside mine Things look so bad everywhere
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Well, inside some people’s minds, things are changing and that brain, you know, is a very interesting piece of your body. Some people get unfortunately diagnosed with a brain disorder called Alzheimer’s disease. It gets worse over time. We’re going to talk about that today. Hey, everybody, I’m Debbie Nigro. You know, Alzheimer’s disease, I don’t know if you know much about it, but it causes the brain to shrink and brain cells to eventually die.
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Nobody signs up for that, okay? Just happens to some people. It’s the most common cause of dementia, which is a gradual decline in memory and your thinking and behavior and some of your social skills. These changes completely affect somebody’s ability to function. There are an awful lot of people who have this unfortunate disease, and there are even more people who are caring for them and trying to figure it out. Okay, it’s very hard. There’s the Alzheimer’s Association, which is a major leading voluntary health organization here in the United States. They are amazing. There are chapters of course in many states, but the one in Connecticut is really
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amazing. There are about 80,000 people out of the 7 million living in the US with Alzheimer’s that are right in Connecticut alone, twice as many, again, unpaid family members and friends providing their care. So there are people who are doing something about this, which is so beautiful. You’re going to meet in just a second here, Tim and Kelly Helstein, who are the chairs of the upcoming Alzheimer’s Association Gala. It’s called Celebrating Hope Gala. And Kristen Cusato, who’s from the Alzheimer’s Association. They all wanted to join today because they’re very excited that they can do something about this.
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Who wants to talk first?
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I say Kim Keller. Yeah, I’m happy to.
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If that works for you, I mean, you did a wonderful introduction for this, Debbie. We appreciate it.
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Thank you, Tim. Tim, you know, it’s very hard. We have a lot of people trying to communicate at the same time. Let’s start with you, then we’ll go to Kelly, then we’ll go to Kristen. Tim, there’s a personal reason you’re involved. You can explain to everybody.
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Yeah, I would love to. So, personally, so my mother’s life way too soon and not only is it something that Kelly and I are doing to honor my mother through this but also to help educate and care and prevent the future generations from having to go through what my family, what my father, what Kelly and I have had to go through. You know, we spend our days telling stories to our kids who love it. In the morning, they always say, you know, tell us a new story about Nanny. Tell us a story that was really funny.
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0:03:32
It’s because she can’t share it herself. So really what celebrating hope is about is not only bringing awareness and celebrating but all those who have moved on because of Alzheimer’s but also celebrating the hope that we can change this, that tomorrow is a new day, that tomorrow the sun rises and there will be what we call a white flower, the first person who has overcome and has been cured from Alzheimer’s and science has been doing so much and the doctors and the FDA and so we’re excited to see what tomorrow does hold but it’s going to be a gathering for all of us to really celebrate that hope. Thank you, Tim.
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And come together. And by the way, I’m very sorry about your mom. I imagine it was a very difficult experience seeing your mother fail and then having to figure out how to deal with this horrible disease because I don’t think the average person really knows how. Kelly, I imagine you’ve learned a lot about Alzheimer’s since you’ve been through this and again sorry for your loss as
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well. Oh thank you so much yes yeah we’ve learned a lot it was definitely an eye-opening experience like Tim said you know we have three young kids and they are missing their grandmother so much so you can give us a gave a good background story about you know why we’re involved but also I want to point out that it’s just a great way to honor those who are struggling with the disease. You know, that’s the first reason we stepped into this role, but also it’s giving us a platform to raise awareness and funds to support research and almost just empower others who,
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you know, are going through the same experience just to link arm in arm and say, us too, and just share our story with them and they share it with others and just creating awareness all around.
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Beautiful. In the house with three kids and a grandma with Alzheimer’s could not have been simple. Was she in your home?
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No, no, no. She was… we just… we did visit very often.
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Yeah. I’m a Grammy so, you know, I feel that… I’m very close to my grandkids and my daughter and I hope that I never, you know, burden her with something like that. But the thing is you really don’t know or do you if you’re going to be somebody who’s going to be headed in this direction. I’m going to throw that one out to Kristin Cusato who is the Director of Communications for the Alzheimer’s Association, the Connecticut chapter. Hey Kristin.
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Hey Debbie, thanks so much for having us.
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Yeah, it’s really nice. I’m happy to give my time. This is important. Is there, from your knowledge, having worked for this organization for so long, a way somebody knows if they’re headed in that direction? There are really loud signs that are louder than just, oh, I forgot what I ate for lunch
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yesterday? Yeah, there’s a couple different ways. And definitely, age is the greatest risk factor. So most of the folks diagnosed with Alzheimer’s or another form of dementia are over the age of 65. However, there are about 200,000 people in the country diagnosed below the age of 65 and that’s called younger onset. So who’s at risk? Well anybody with the brain unfortunately is at risk and if you have a first-degree relative like a parent or a sibling, you are at a little bit of a greater risk.
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Doesn’t mean you’re going to get it. If you have a very strong genetic component which you can actually get tested for. If you’re a counselor we suggest you may be at a greater risk. Also doing things that are not good for your brain. There’s a whole list and if you’re a smoker it puts you at a greater risk. If you have high blood sugar and high blood pressure that puts you at a greater risk. Heart issues, so that’s why we really talk about not only taking care of folks when they get to the point where they need assistance and where caregivers need assistance, which is all the time. Also talk about lifestyle interventions that anybody can start at any time that can help
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reduce your risk. Is it my imagination or do we have more Alzheimer’s in the world these days than even in the recent past? Are there more people with Alzheimer’s and dementia or is it just that we’re hearing more about it?
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Yeah, the number is definitely going up. It was about six point something last year and now it’s up to seven million, but we’re talking about the fact that I think Debbie, years ago, there was a lot more of a stigma and people would not talk about it. Oh, Grandma’s just got the senile. We’re gonna put her in the back room. That’s not how it is. People have this disease. They live very good quality of life. Families need to reach out and get assistance. You need to have a village around you. There’s so much you can do. And now we’re in this era of treatment thanks to what Tim and Kelly were mentioning, all this money raised to
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go in part to research. We have treatments now that change the course of the disease. Never had that before.
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You can prove that. That’s great news. Great news. Great news. I want to go back to Tim and Kelly for a second. I grew up, you guys, in my father’s family business and my Aunt Eleanor and my family was always chair people of events, big charity events. So I know this is not a small undertaking to be the chairperson of an event.
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And it’s going to be, just for those of you guys who are just tuning in, at the Delamar Hotel, you couldn’t have picked a nicer spot, of course, and Atria Living, I know is your sponsor, they’re fabulous. I’ve done business with them and I just love everything that they’re about. And what are you hoping people know about this, the date, the time, the place, whatever?
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Sure, absolutely. Thank you. But the other piece of it, if that doesn’t work and you’re not able to participate, just there’s an opportunity to donate. And it’s incredible how small the community is in terms of when you talk about Alzheimer’s. Everybody that I’ve talked to ever since we started to do this has opened their arms to say, I do have Alzheimer’s. Yeah, it’s amazing.
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And so to be able to do that and to be able to donate and contribute to this is really what it’s all about. We can come together and lock arm in arm like Kelly said.
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Yeah, it’s great. I know the Connecticut chapter, as I am now informed, has influenced public policy changes and provides support to the Alzheimer’s and Dementia Research. So it’s a powerful group and I want to congratulate you all for being part of it, you know, Kristen and Tim and Kelly. When you go to a gala, obviously, there’s other things there, ways you can raise money.
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Are people donating stuff to be like auctioned off or a silent auction or is there anything else happening that night? Sure, I can, we’ll have a silent auction, a live auction.
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And then there’ll be a panel race opportunity as well. So it will be a fun night, a sit-down dinner, music, dancing, celebrating, you know, maybe a tear or two, but more importantly, hearing some great speakers who have been fighting for and against this disease. And so it’s just going to be a fantastic night that we can all come together and say, we’re in this together. And that’s really what it’s about. And Deb, if you don’t mind me just adding, actually on April 11th, just to start it out. We’re also going to be, Kelly and I will be guest bartenders at the Town House right off Greenwich Avenue from 6 to 7.30
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and drinks and proceeds will be going to Celebrating Hope and the fight for Alzheimer’s disease as well.
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Hey Kelly, you know how to bartend?
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No, not at all. It’s going to be very entertaining.
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Kelly, listen, I’m going to give you a little tip. Just give them everything. Anything, put every liquor in there and just say, call it a Kelly special. It worked for me when I first bartended. Years ago I had no idea what I was doing. All my girlfriends were making money bartending. I’m like, I don’t know what I’m doing, but I’m going to fake it.
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So I dressed up cute. I just put every liquor in the thing and just got everybody drunk. And they were like, oh, we love the Debbie special. What’s in it? I don’t know. So just do that.
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That’s amazing.
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Yeah, you just have some fun with it. I like the celebrity bartender thing. That makes it fun for people to want to come out and give stuff. I imagine, Kristen, there’s more fun things that the organization does to get people to shake out some cash. Got anything else you want to share about that?
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Absolutely. We have right now The Longest Day, which is anybody can do at any time. It’s a fundraiser, kind of a one-time fundraiser, just doing something you love. We have all our walks to end Alzheimer’s, which are in the fall. And October 29th, I believe, the 27th, I believe, is the walk in Norwalk for Fairfield County. And we are always looking for volunteers if people want to get involved.
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We have community engagement. We have people who teach classes, who run support groups, people getting involved in these walks. We’d love anybody to give us a call. And if anybody has any questions about dementia, we have an 800 number, which is a 24-7 helpline that’s 800 272 3900 any question about Alzheimer’s dementia we’re there for you.
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Yeah I wanted to I’m glad you brought that out because I thought that was impressive that the organization’s Connecticut chapter is available 24-7 for anybody a family member a caretaker a medical professional a health care professional who has any needs and that’s just amazing. So thank you all. I appreciate you joining the show today. I hope I did you a service by sharing the information. Once again, it’s the Celebrating Hope Gala, April 26th at the Delamar Greenwich. And Tim and Kelly Helstein are the chair people this year honoring Tim’s mom who passed with Alzheimer’s Association Connecticut chapter, which is very, very powerful. They’re making a difference.
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Check it out, and hopefully you’ll go and share some shekels so they can help continue the research. Thank you all three. Have a great day.
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Thank you.
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Ciao, ciao. Ciao, ciao. More to come here on the Debbie Nigro Show.
