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Speaker 1: From WBZ News Radio in Boston. This is New England Weekend.

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Speaker 1: Each week right here we come together, we talk about

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Speaker 1: all the topics important to you and the place where

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Speaker 1: you live. Great to have you back with us this week.

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Speaker 1: I'm Nicole Davis. Healthcare has changed quite a bit over

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Speaker 1: the past quarter century, and that includes finding treatments and

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Speaker 1: even cures for conditions that have been around for much longer.

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Speaker 1: There is no cure yet for Douche muscular dystrophee, but

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Speaker 1: a lot of progress has been made in learning about it,

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Speaker 1: supporting those who have it, and working to find that cure.

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Speaker 1: This has all come in part thanks to the work

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Speaker 1: of the Jet Foundation in Norwell. The foundation was created

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Speaker 1: by two South Shore parents out of love and concern

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Speaker 1: for their child Jet, It was diagnosed with the condition

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Speaker 1: at a young age. In the years since, they've raised

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Speaker 1: millions of dollars for research, launched a special summer camp

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Speaker 1: for kids with the condition, and offered critical family resources

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Speaker 1: like medical and fiscal support. And CEO Eric Snyder is

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Speaker 1: here now along with the Foundation's development director, Mara Carrol.

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Speaker 1: It is good to have you both with us today,

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Speaker 1: and Eric, I'd love to hear first about the McSharry

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Speaker 1: family about Jet and how this all became a reality.

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Speaker 2: Sure a Jet Foundation was founded twenty five years ago,

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Speaker 2: actually this year, so it's an amazing accomplishment for the

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Speaker 2: foundation originated out of a kitchen in Pembroke and our founder,

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Speaker 2: Christine and husband Steve McSherry got a diagnosis of dushen

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Speaker 2: with their son Jet, and Jet is our namesake and

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Speaker 2: that's what really started twenty five years of amazing work

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Speaker 2: supporting the Duchene community, which started out you know, locally

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Speaker 2: and has grown to a national organization helping thousands of

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Speaker 2: families in and out of different communities across the US.

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Speaker 1: I love that and more. For people who might not

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Speaker 1: be familiar with duche muscular dystrophy, tell us a little

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Speaker 1: bit if you could, about what exactly it is and

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Speaker 1: what the symptoms are that come along with that.

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Speaker 3: Absolutely, so, Duschen is a neuro muscular disorder. Most people

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Speaker 3: are familiar with, you know, the MDA and they support

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Speaker 3: you know, neuromuscular diseases, and there's about thirty five different

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Speaker 3: types of muscular disorders, but Dushen is the only fatal form.

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Speaker 3: And so what happens with children born with dushen. They

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Speaker 3: are born healthy, learning to crawl, learning to walk, but

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Speaker 3: they they don't have what produces dystrophin, so they start

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Speaker 3: losing muscle starting at age five. They're usually in a

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Speaker 3: wheelchair by mid teens.

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Speaker 4: And if you think of the.

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Speaker 3: Heart as the biggest muscle, so early cardiac failure. So

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Speaker 3: you know, while you know their other friends or siblings

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Speaker 3: are gaining independence, they are they are becoming dependent on

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Speaker 3: wheelchair and things like that.

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Speaker 1: That's got to be tough for a family. Eric and

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Speaker 1: knowing that you know your child just wants to move

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Speaker 1: and wants to do everything that other kids are doing.

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Speaker 1: Tell us a little bit about the impact that a

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Speaker 1: diagnosis like this can have on a family.

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Speaker 5: Oh, initially it's devastating.

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Speaker 2: You know, a family much like you are my myself, Mora,

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Speaker 2: And you know, you get your loved one and you

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Speaker 2: have this vision of what your perfect little family is

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Speaker 2: going to look like, and then the diagnosis happens, and

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Speaker 2: you know, you realize very quickly how much it not

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Speaker 2: only is it going to affect the individual, but the

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Speaker 2: entire family unit.

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Speaker 5: And it's a.

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Speaker 2: Complex, I would say, a complex web of physical, social, physiological.

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Speaker 5: And financial strain.

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Speaker 2: That the family now has to consider just as they

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Speaker 2: go on day in day out, let alone looking out

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Speaker 2: into the future. So it's it truly is a fully

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Speaker 2: encompassing path that these families embark on, and you know

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Speaker 2: we are there to step in and support the families

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Speaker 2: on all of those different levels along the way.

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Speaker 1: And we'll talk about that definitely in just a moment,

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Speaker 1: because I do want to learn all about your programs.

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Speaker 1: I feel over the past twenty five years there has

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Speaker 1: been a huge leave when it comes to medical technology,

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Speaker 1: medical advancements. Tell us what the world of somebody with

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Speaker 1: dushen looks like now as opposed to when jet was diagnosed.

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Speaker 5: Well twenty five years ago.

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Speaker 2: If you search them the Internet, which we all do

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Speaker 2: when you have a sniffle or a sneeze, you're you're

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Speaker 2: on there trying to self diagnose doctor Google and yeah,

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Speaker 2: you're chat at chat GPT. You pull up a variety

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Speaker 2: of different remedies for that for that illness.

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Speaker 5: But you imagine this, two decades.

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Speaker 2: Ago, you search dushen and hardly anything popped up on

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Speaker 2: the on the Internet. There wasn't hardly there was zero

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Speaker 2: treatments out for dushen. And over the over the next

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Speaker 2: you know, two decades, there has been a massive of

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Speaker 2: pharmaceutical support in this area and there's many treatments available

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Speaker 2: for families to look into and to adopt for what

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Speaker 2: might be best for their child at this point, so

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Speaker 2: it's really come a long way and there's a lot

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Speaker 2: of hope that families have now. You know, there is

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Speaker 2: no cure yet, but they're because of the new treatments

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Speaker 2: that our pharmaceutical companies are coming out with, our guys

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Speaker 2: are living longer and they're having much more fulfilling lives

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Speaker 2: than ever was expected two decades ago.

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Speaker 1: Well, and you all over at the Foundation are a

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Speaker 1: major driver behind that. Maura, tell us a little bit

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Speaker 1: about your programs then, how you're connecting these people who

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Speaker 1: are diagnosed in their families to the support that they

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Speaker 1: need to navigate all this.

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Speaker 3: Absolutely, and that's really why we were founded because there

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Speaker 3: was no awareness and when families were diagnosed twenty five

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Speaker 3: years ago, they didn't know where to go.

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Speaker 4: There wasn't any but any place to go.

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Speaker 3: So over the years we have developed support groups, family

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Speaker 3: support groups, educational conferences and webinars to connect families. Two

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Speaker 3: of our main programs that we're very well known for

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Speaker 3: is our Jet Giving Fund, which is a financial assistance

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Speaker 3: program specifically to help families on three levels.

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Speaker 4: One for accessible vehicles. That's one of.

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Speaker 3: The number one barriers to families for independence and connection

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Speaker 3: is these very expensive vehicles. So we have an incredible

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Speaker 3: program that helps families in need receive these vehicles. We

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Speaker 3: also have an emergency fund and an equipment assistance fund,

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Speaker 3: and then Camp Promise.

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Speaker 4: Is also one of our pillar programs.

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Speaker 3: So this is you know, a barrier free week long

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Speaker 3: experience that's typically not accessible to campers and our guests

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Speaker 3: that come to camp. So we've been doing that since

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Speaker 3: two thousand and nine. We have seven camps across the

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Speaker 3: country now, and you know, families are reaching out to

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Speaker 3: us on a variety of levels and feeling connected and

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Speaker 3: not receiving this diagnosis.

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Speaker 1: Well sure, and Americans are strapped right now in general,

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Speaker 1: right you know, the cost of healthcare is through the roof,

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Speaker 1: just the cost of living overall is through the roof.

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Speaker 1: So programs like yours, Mara, I mean, this is a

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Speaker 1: lifeline for families that may otherwise be drowning in health

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Speaker 1: care costs.

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Speaker 3: Absolutely, and that's really where we've been is focusing on

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Speaker 3: those unmet needs of the community today. And yeah, the

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Speaker 3: Jet Giving Fund in particular is you know, families are reaching.

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Speaker 4: Out to us just to really put food on the table.

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Speaker 3: That's really what our Emergency Assistance Fund helps families. And

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Speaker 3: then you know, one of the best things that we

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Speaker 3: get to do is is gifting a van to a

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Speaker 3: family that you know, in some cases never got to

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Speaker 3: leave their house with their wheelchair because they didn't have

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Speaker 3: a vehicle that could take them. So, you know, we're

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Speaker 3: really privileged to be able to make such an impact

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Speaker 3: on the community.

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Speaker 1: It is those little things that are not so little,

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Speaker 1: and you know, twenty five years of that definitely adds up. Eric,

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Speaker 1: what are you doing over there to mark quarter of

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Speaker 1: a century of this great work that you're doing. Is

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Speaker 1: there anything special that you're focusing on right now?

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Speaker 2: Yeah, twenty five years, right, you have to celebrate the

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Speaker 2: staying power of this organization and how it's grown from

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Speaker 2: day one to the twenty fifth year. We are delighted

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Speaker 2: to be offering out to the community and our friends

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Speaker 2: of the Foundation our twenty fifth year anniversary Silver Soire,

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Speaker 2: which is a gala that is coming to the local area.

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Speaker 5: Granted Links on June eleventh.

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Speaker 2: So we look forward to celebrating wonderful work support being

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Speaker 2: there united with our families, our donors, our friends of

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Speaker 2: the foundation, and at the end of the day, to

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Speaker 2: honor the McSherry family and all the work that they've

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Speaker 2: done to help so many people over the course of

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Speaker 2: this this.

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Speaker 1: Time granted links. That skyline view gorgeous. I've been there

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Speaker 1: before for a couple of weddings. I mean, that is

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Speaker 1: a beautiful venue, So it sounds like it's going to

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Speaker 1: be a great night regardless.

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Speaker 5: Yes, we are looking forward to it.

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Speaker 2: I mean, it's there's no other way to say it

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Speaker 2: that it's it's exciting, and it's as a as a

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Speaker 2: nonprofit and you know, the donations that we receive go

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Speaker 2: right back into the community, goes right back into the

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Speaker 2: Duschen families. As Moron talked about earlier, to be able

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Speaker 2: to celebrate the growth of this organization, to to do

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Speaker 2: what to just help more people and the mission does

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Speaker 2: not get lost. So we look forward to celebrating wonderful

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Speaker 2: work and certainly acknowledging the mcsherry's and what they've done.

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Speaker 2: They've really changed the ecosystem for this community over a

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Speaker 2: lot of years.

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Speaker 1: Absolutely. Well, then let's talk about how people can support

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Speaker 1: you more. If they want to get tickets to the gala,

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Speaker 1: or if they can't make it but they just want

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Speaker 1: to give in any way they can, how can they

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Speaker 1: connect with you to do that?

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Speaker 3: Absolutely well, they can certainly go to our website, which

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Speaker 3: is jet Foundation dot org.

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Speaker 4: Get j et Foundation dot org.

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Speaker 3: From there you can learn more about our soare and

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Speaker 3: attending we also, you know, there's certainly direct donations that

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Speaker 3: we love to receive, but there's a lot of other

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Speaker 3: ways you can get involved, especially here on the South Shore.

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Speaker 3: We have some athletic events like our We have a

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Speaker 3: Foulmouth road race team. We have a cohase A triathlon team,

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Speaker 3: Galas Rakel and Hopkintent. So we have a lot of

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Speaker 3: athletic fundraisers if people would like to get involved. But yes,

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Speaker 3: twenty five years are silver soare We hope people will

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Speaker 3: come out and join us. Certainly you can donate auction items.

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Speaker 3: We're gonna have live and silent auctions. We will have music.

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Speaker 3: It will be a fun night.

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Speaker 1: And Eric, if people are maybe listening and they own

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Speaker 1: a business, are you looking for corporate partners? Are you

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Speaker 1: looking for sponsors. How can they assist in that.

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Speaker 2: Way everything, Nicole, great question. We love corporate sponsorship.

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Speaker 5: You know.

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Speaker 2: Another way to get involved is through volunteerism. There's always

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Speaker 2: an our opportunity for individuals to really learn firsthand on

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Speaker 2: what it's like to do our work, certainly with the

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Speaker 2: seven camps that we have, but you know, the partnerships

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Speaker 2: that we can have with local businesses is wonderful and

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Speaker 2: that's a great way to bring in you know, good

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Speaker 2: cohesive community work together.

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Speaker 1: Now because you're not just working in Massachusetts anymore. I

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Speaker 1: mean this all started, like you said, kitchen table over

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Speaker 1: on the South Shore, but this is a nationwide thing,

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Speaker 1: so I'm sure all the help you can get you're

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Speaker 1: never going to turn it down.

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Speaker 5: That's correct, That's correct.

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Speaker 1: Yeah, all right, Jetfoundation dot org. Maura, are you on

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Speaker 1: social media?

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Speaker 3: The Foundation is on social media. We have a Facebook page,

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Speaker 3: we have an Instagram, we have LinkedIn.

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Speaker 4: You can find us on all of those channels.

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Speaker 1: Maura and Eric, thank you so much for your time.

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Speaker 1: It's been great learning about the foundation, and I hope

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Speaker 1: you have a lovely soare in June in Quinsy.

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Speaker 5: Thanks so much. Thanks for having us.

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Speaker 1: Have a safe and healthy weekend. Please join us again

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Speaker 1: next week for another edition of the show. I'm Nicole

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Speaker 1: Davis from WBZ News Radio on iHeartRadio