Building on Legacy: Hilary Kruchowy’s Vision for the Future of NJCTS

In this episode, we’re excited to sit down with Hilary Kruchowy, the new Executive Director of the New Jersey Center for Tourette Syndrome (NJCTS). Hilary shares her journey, from her beginnings in art history to her transition into nonprofit leadership, culminating in her new role at NJCTS. We dive into Hilary’s vision for the organization, particularly how she plans to build on the legacies of past leaders while bringing her own fresh perspective to the table. We also discuss the incredible impact of NJCTS programs, including the Leadership Academy and the Rutgers partnership, as well as some exciting upcoming events like the 20th Anniversary Gala and the Parent-Teen Summit. Whether you’re part of the TS community or just curious about the work being done, this conversation is a great way to get to know NJCTS and its future under Hilary’s leadership.

Episode Highlights:
[0:00] - A special announcement about the NJCTS 20th Anniversary Gala.
[2:11] - Hilary Kruchowy discusses her background in nonprofit work and how it prepared her for her new role.
[3:58] - Reflecting on the legacies of past leaders, Faith and Pat, and how Hilary plans to honor their work.
[7:50] - Hilary shares her vision for the future of NJCTS, including expanding programs to serve more of the TS community.
[10:00] - The global impact of NJCTS programs and the challenges of state-level funding.
[13:12] - The importance of educating pediatricians and neurologists about Tourette Syndrome.
[16:24] - Exciting new initiatives like the Parent-Teen Summit and how they foster connections within the TS community.
[22:56] - A deep dive into NJCTS’s advocacy work at the state level and the critical role it plays in securing funding.
[26:46] - How listeners can get involved with NJCTS, from volunteering to joining the mailing list.

Links & Resources:

 NJCTS 20th Anniversary Gala: https://njcts.org/20thanniversarygala/ 

Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

Transcript

Hilary Kruchowy: 0:00

We are reaching out to all of our advocates and our past camp participants and our leadership academy attendees, and we want them to tell us how they're doing and how are their participation with us affected them and what they're doing now, so that they can kind of share their success story, so that that you can be a successful, thriving person, a superhero with Tourette syndrome, and we know that those stories will inspire the kids who are coming up behind them. So anybody who came from outside of New Jersey, we'd love to hear your story.

Michael Leopold: 0:33

Welcome to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing the stories and experiences relevant to the TS community. Hello and thank you for joining us on the uptick. Brought to you by The New Jersey Center for Tourette syndrome and associated disorders. Before we introduce our guest, I have a special announcement, on october 17, we'll be hosting the njcts 20th anniversary keeping the faith Gala. We're celebrating 20 years as an organization at the Bridgewater Marriott in Bridgewater, New Jersey, the gala will feature a cocktail reception, seated dinner, dessert, silent and live auctions and a presentation. We would love for you to join us at the gala, and you can purchase a ticket at njcts.org/gala now if you can make it in person, that's okay too. You can also make a donation@njcts.org Your contributions will help us continue our signature programming, such as our education outreach, youth development programs, congressional lobbying, Family Retreat weekend, the Leadership Academy and the Tourette clinic at Rutgers University. In today's episode, I have the privilege of speaking with Hillary. Khrushchevy. Hillary is the new executive director of njcts, and she started on july 11. We'll talk about Hillary's background and goals for the organization, and we'll unpack a little bit more about what all njcts Does as an organization and how it supports our community. Hilary, how are you doing today?

Hilary Kruchowy: 2:11

Great. Thank you.

Michael Leopold: 2:12

If you could start by telling us a little bit about your background, professionally and nonprofits, I know you've been at njcts for a couple years now. Do you want to walk us through a little bit of your involvement? With us? I'd

Hilary Kruchowy: 2:24

be happy to I am originally from New Jersey. I got my degree at Rutgers University. I majored in art history. My original dream was to be a director of an art museum. After that, I went to Temple University, and I received my Masters of Fine Arts Administration in orchard history classes and business classes, and through that position, I was placed in the fundraising office at a local art museum, where I learned that development was indeed a profession, and I've worked in several different nonprofits over the course of my career. I worked at a YMCA. I spent a lot of time in the elder care space, and I have worked throughout New Jersey, which has been very helpful in joining this organization, because we are statewide.

Michael Leopold: 3:10

I knew before this you were director of development for two years for njcts For let's hear some don't know. What does the Director of Development do? Director

Hilary Kruchowy: 3:19

of Development is in charge of fundraising, of building relationships with individuals, securing contributions from corporations, from foundations, working on our special events. We have NJ walks for TS every year, as well as exploring the opportunities to have other events, such as the gala that we're going to

Michael Leopold: 3:37

have in October. As you know, this is a really trying time for our organization. We lost our last Executive Director, Pat in March and faith almost exactly three years prior, just just a day apart, day and three years I'd like to hear how you aspire to honor and continue the legacies of Pat and faith.

Hilary Kruchowy: 3:58

I am honored to have been appointed to this role, and I am committed to following the legacy of faith as well as of Pat as I've been meeting with people and meeting with the staff over the last two months. I am so inspired by faith vision, what she put in place to serve our families and to expand the knowledge about Tourette syndrome in New Jersey, I just am committed to honoring her work in that of Pat's. It's been a hard time for our staff, but they have worked together over the past few years. We have maintained the integrity of all of our programs. We have started new programs such as caring connections for our adults, as well as the podcast. Most recent Leadership Academy was fabulous, and we're looking to continue all that into the future. Yeah, feeds

Michael Leopold: 4:47

and Pat were both instrumental in expanding the programming at njcts. I mean faith being a founder of it and obviously getting all of this started off the ground, Pat really expanding it in different areas, like. This podcast was really her brainchild. But I'm also thinking of the Rutgers partnership that we have to do with the genetics repository to devote funding to more research CBIT trainings that ngcts hosts for physicians and therapists around the country. And a lot of that is relatively new. The CBIT trainings and our partnerships. You know, it's an ever growing kind of expanding sort of programming. How do you feel stepping into this role?

Hilary Kruchowy: 5:28

I'm nervous, I'm excited, I'm I'm humbled to have been given this, this role. It's a my first time being an executive director. So I know I have a lot to learn. So I've been meeting with as many people as I can in the community, to within our Tourette Syndrome Community, to find out their recommendations, to see what we what they think we do, well, where they think we could do with some improvement. I learned so much about the program at Rutgers as well as the repository, and I think it was so amazing how faith realized that there was not enough research for Tourette's syndrome, and I love the story. I don't know if Jay told it in his podcast, but she was determined to make more research happen, so she, I wouldn't say, badgered, but she met Jay tichfield. He told her, there's reason that there's no research for tread syndrome, because there's no money and because there's no genes to study. And she said, Well, how are we going to make this happen? And it was through her persistence that she made the state built the repository, that they found funding for it, and we have been partners in providing the genetic material and finding the families that would participate in it. So I'm committed to seeing that grow and finding more ways to increase research into the cause and treatment I am amazed by in terms of the Seba program, I've met so many of our psychologists, and they all attribute their careers and their success to being part of our prep to come at Rutgers. So I think it's important that we continue our partnership with Rutgers and invest as much as we can. Our most recent grant funding from the state is towards the gazap program and to hiring the students and providing them with the stipends and paying director so that we can keep the CBIT program going Faith's vision was that there was not enough practitioners for CBIT, and that it was not affordable and accessible, because many times, if you finally found a provider, it was very expensive. There was a waitlist, and she didn't want anybody to have to wait. So all of these things were so amazing to have, for her, to have thought of 20 years ago, and that that we're seeing the benefits of it now, and that and the importance of continuing it all into the future and growing it. You know,

Michael Leopold: 7:51

part of the big shoes that you're filling here is, yes, continuing the legacy of those prior but it's also an opportunity for you to put your vision and goals into that organ, into the organization, and really bring your perspective and priorities. I'd love to hear a little bit about what you see as the most pressing needs for our New Jersey TS community, and how the organization is addressing them, or how you'd like to see us address them more.

Hilary Kruchowy: 8:20

There are 20,000 kids in New Jersey with Tourette syndrome, and we're only serving a small portion of them. So I want my goal is to serve more kids and to meet them where they are. We know that some kids don't want to be advocates, so we want to find programs where they they might want to get involved with us, maybe just with advocacy or just attending our family programs. We want to serve more adults. We we've been receiving a lot of feedback that we're very strong with our programs through 18, but our adults are looking for a community to get together. We are very grateful for our state funding. It is two thirds of our budget. We want to build the relationships with our local legislators to make sure that the funding continue. And in the same way, I want to grow our fundraising so they're not quite we're not quite as dependent as something happens, we'd still be able to manage as well as increase our fundraising so that we can do more of the programs and increase more participants at camp. Maybe grow the Leadership Academy. And we need the funds in order to make those things happen. One thing that

Michael Leopold: 9:24

always strikes me is so cool about njcts is, I mean, it's a New Jersey sign up for Tourette Syndrome, but the work that we do is is global. I mean, there are people at the Tim Howard Academy from from around the world. There's virtual programming that impacts communities abroad. And so it was a challenge in ways, because our funding is local, or, I should say it's state level. You'd mentioned the desire to build up partnerships, new funding, opportunities and channels for that. Are there ways for the organization to get more funding and involvement volunteers, otherwise, from those outside of the state of New Jersey? Yeah. This

Hilary Kruchowy: 10:00

is our 20th anniversary year, and we did implement a program. It's called, where are they now? We are reaching out to all of our advocates and our past camp participants and our leadership academy attendees, and we want them to tell us how they are, how they're doing, you know, and how are their participation with us affected them and what they're doing now, so that they can kind of share their success story, so that that you can be a successful, thriving person, a superhero with Tourette syndrome. And we know that those stories will inspire the kids who are coming up behind them. So anybody who came from outside of New Jersey, we'd love to hear your story. We used to get another way to get involved would be consider joining our NJ walks for TS campaign in May. You don't have to come to the event to help us raise money. You could put together a campaign on our peer to peer website that will be going live in January, and even sending letters to our legislators about the impact of njcts on your life or on on Ts, and just encourage them to help funding us.

Michael Leopold: 11:04

Yeah, I'll say this as a pitch to to our listeners. I live in New York City and grew up in the Midwest, and have been involved in in ADHS since 2016 and you know, there's so so much of the work they do is so great and helps all of us outside of New Jersey, just the programming, the research that's being done. So definitely get involved and don't feel limited by your geography. There's always ways that you can contribute or benefit from the programming being done. So want to give a little pitch for that, because it's something that's been really important to me. And I, you know, I find I get as much out of this as I put into it.

Hilary Kruchowy: 11:38

You find us how Jeff and you guys. I

Michael Leopold: 11:41

was in undergrad in Connecticut, and my doctor knew I had to read doctor, I was singing for Tourette, and I knew I was a good speaker, and said, Hey, there's this program, the tomorrow Leadership Academy, hosted by the New Jersey Center for Tourette's center. You may be interested in it. This was Dr lechman and Dr King at Yale. Both of them kind of collaborated. They both knew faith and put me in touch with her. And then Melissa, and then 2016 was my first year that I became, you know, a coach at the at the academy. So that it was really through my doctors that I found out about about at GCTs, and got involved that way. Some of the things you've mentioned to me as well, in terms of programming you're excited about, and things you'd like to expand on is that the adult programming like you mentioned, also you mentioned the need for more neurologists and psychologists who are versed in Tourette Syndrome. There's a lot of doctors out there, a lot of therapists. They may not know much about Tourette. And ultimately, we'd like to build that list of referrals that we can give to families that need it, to point them in the right direction of folks that can help them. And you've mentioned me before that a lot of our referrals are retiring, and there's always that that need to grow that list. And I think some of the work that njcts is doing that's really incredible is around teaching that next generation of physician doing those CBIT trainings, you can take part in that no matter which state you're in, if you're a physician looking to get that kind of CBIT training and add that to your repertoire of tools you use for patients, we

Hilary Kruchowy: 13:12

also offer Grand Rounds for neurologists pediatricians, where we provide a professional Speaker, as well as one of our youth advocates, and kind of educate people about Tourette Syndrome, the professionals what to recognize how the people with Tourette Syndrome would like to be treated during their appointment. And we are anxious to educate as many physicians and pediatricians and neurologists as we can. We have meeting with a lot of our psychologists, and they said that there's a growing number of neurologists who treat kids with Tourette syndrome that are retiring. So I've been understanding that we need to build our physician referral list for more neurologists. So we're welcome to hear from neurologists who focus on Tourette syndrome and would like to be put on our referral list.

Michael Leopold: 13:59

Absolutely. The educating pediatricians part's interesting, because so I would imagine the first doctor that a lot of people see with their ticks would would be their pediatrician, just because of its onset. Oftentimes in childhood, that was the case for me. And then eventually I try to remember the order we went through, because you see all the different doctors. They bounce you around to figure out what, what's going on, because maybe I had a no sniffing tick or something. At some point, I went to the ENT, wondering if it was situs related, and then eventually neurologists. And that was kind of the route I took. But it started with my pediatrician, and I went in talking about this, this urge I was getting to bop my head up and down. I think it's so important for pediatricians to be able to detect this and say, hey, you know this is possible to read, or these are some ticks we're seeing. I think that could give families a lot of peace of mind and hopefully save them some of that time and stress trying to figure out, you know, what's going on earlier on, and when

Hilary Kruchowy: 14:55

you said about the stress, I think it's important for them to encourage the parents to be. Okay with the kid ticking, because it's okay that they tick. It's a disorder, and the more that they stifle it, the harder it is. And that we need everybody to feel comfortable in their skin and not to make them feel stressed or feel uncomfortable or self conscious about it. I just heard a story about how a pediatrician had said, he said, don't talk about it with her, because it's just gonna make it worse. I think as a mom, you have to make your kid feel confident and strong and not think anything is wrong, and empower them to be the best that they can be, and not make them feel self conscious about it, especially in those early years where

Michael Leopold: 15:38

kids are fine. You

Hilary Kruchowy: 15:38

don't have the information, you don't have the education you don't know what's the right thing to do?

Michael Leopold: 15:42

Exactly No. It all starts with that education piece and bringing more awareness to the doctors, to those people. Kind of first line we're going to be seeing it, making sure that they know the signs, know what to look for. We got talking a little bit about some of the new initiatives and programs you're excited about. I know you've said that there's a there's a parent teen Summit coming up, typically in February this year, toward the end of January of next year, it'll be generally for parents and teens, like the name would would imply, but I know this upcoming iteration of it, they're making a new component for kids under 13, so that they can meet each other and start getting involved and making those connections with each other. I would love to hear your thoughts about that. I think it's a really a really exciting program.

Hilary Kruchowy: 16:24

This will be the third time that we're doing this. This the first time that we're creating the component for the under 13. We wanted to create something that is happening six months after camp, because it's long time for the kids not to get to see each other. We've had a great attendance from the teens, but we're seeing that. It's so important for the under thirteens to meet the teenagers, to learn about what's going to happen when they go to high school. They're handling their tics with their sports. And it's important for all the parents, for all the different ages to get together. It's so important for the younger kids to meet the older kids. We're very excited about the parenting summit this winter, it's going to be the first time that we let the kids who are under 13 come we are trying to create a continuity of service for the kids. A lot of them come to camp, then maybe they get a little too old to come back to camp, but we want to create a way for them to get to know the older kids, so that they might want to become youth advocates, that they might want to join our youth council. The younger kids benefit from meeting the older kids to see how well they're doing in school. Just recently, I met a young man who's nine. He met some high school students. One was that Captain of the tennis team. One's a surfer, just like him. His life changed right in front of my eyes when he saw that the big kids are thriving, they're going to college, they have girlfriends and boyfriends, and it was also inspiring to watch the parents of the young boy meet the parents of the big kids, who were able to understand and exchange recommendations and share the hardships and and all be the sigh of relief that everything is going to be okay. So we're hoping to create that energy, those interactions in the parenting Summit, which I guess will be called the Family Summit. Family something that makes sense now, you

Michael Leopold: 18:09

know, bring the whole family. We touched on this a little bit. We were talking about pediatricians and newly diagnosed families with Tourette's Syndrome. What message would you like to share to families and individuals that are newly diagnosed,

Hilary Kruchowy: 18:22

get in touch with us. Come to our family programs. We're trying to build a calendar of opportunities for our families to get together. It starts with our family retreat weekend. Going to be having a Family Fun Day at the end of September, and there'll be the opportunity in February. And then again, we get back to the, you know our camp weekend, and reach out to us. Let us know where you live, where you'd be willing to travel to, what kind of programs that you're looking forward to. One of my goals is to create opportunities for the families to get together. We're located in Somerville, but we want to start offering programs down in South Jersey and North Jersey, you want to meet everybody where they are at.

Michael Leopold: 19:04

What would you say has been the most rewarding part of your work, and what inspires you to work with the tri community?

Hilary Kruchowy: 19:11

The most rewarding part has been meeting our youth advocates and our youth council members, seeing their confidence and their persistence and their commitment to educating the community about Tourette's Syndrome, as well as inspiring the kids that are younger than them to own their Ts to make it their superpower. The Leadership Academy was life changing for me to be in a room full of those 20 amazing kids. They were so comfortable in their skin and the relationships that are built, they're all successful. Many of them are going to great colleges. They have big dreams. Meeting the coaches was inspiring. They're all very successful. And the fact that they would give four days of their life, you know, taking time off from their work, traveling from out of state, should be with. Us and to make sure that the program is strong and living up to the legacy of the last 11 years. So I'm excited to be able to participate and plan for next year, as well as explore other opportunities for engagement.

Michael Leopold: 20:14

Yeah, and I think for a lot of us, it's about the it's about the people who are helping the stories, you know, like the kids, inspire us. I know you've mentioned some stories before of testing Kyle at the academy, or listeners may appreciate hearing some of that, if you if you'd

Hilary Kruchowy: 20:27

like to share. So one of our participants at the Leadership Academy is named Kyle, and he was there one of the summers he was going for the tour of the repository, and he met one of the scientists who was working there, and he recognized her, and he said to her, I recognize you. You were the advocate who came to my school. And when you came, when you made the presentation about Tourette syndrome to my class, you changed my life. And I immediately decided that I was also going to become an advocate just like you, so that I would help the other kids behind me and make them feel comfortable and help them navigate living life with Tourette Syndrome. In that moment, I realized that I was passionate about this mission and was ready to commit my career to making sure that we can implement all the programs that we can

Michael Leopold: 21:17

Yeah, that's so cool. I mean, that's when you know, all right, what we're doing matters. It works. It's it's getting results. You're getting, you know, we're helping real people. And you see,

Hilary Kruchowy: 21:26

we changed their life in the same way that I know that we changed that young boy's life when he met the two teenagers a couple of weeks ago. That's amazing. And one of the this year's coaches had not been involved with us throughout his high school career, but he received one of our scholarships, and at the scholarship lunch, he sat next to Dr tischfield, and he was also going to Rutgers. So he talked to Dr tischfield, and he asked if he could volunteer in his lab. So he's been working in his lab for the last two years, and his current goal is to become a neurologist this year because he wanted to get involved, to give back to the kids. He became a coach. So I love the story of how he made he wasn't comfortable being an advocate when he was in high school, but now he is wants to give back and make a difference, and he I thought he did a great job at the academy. It was really exciting to see him with the kids. Yeah,

Michael Leopold: 22:19

it's hard talking about Tourette, I mean, at any point in life, especially the middle school, high school years. So I always love when I when I see people that, you know, maybe they did it then, or maybe they didn't advocate as much then at that age, but then come back a little older and do that. You're never too young or too old to contribute to this. I think a lot of our listeners may not know as much about how the organization works when it comes to lobbying, the legislative involvement that njcts has within the state of New Jersey, I would love it if you could share a little bit about njcts approach to advocacy at the state level.

Hilary Kruchowy: 22:57

I'd say that I learned trial by fire this spring, we received two thirds of our revenue from state grants, and this year, one of our grants was cut in half in the original state budget. We received some advice from a couple of Chiefs of Staff, and they said that we needed to start lobbying. We needed to get in touch with all of our state legislators. It all starts at the local level. We needed to reach out to our local districts, our assembly people and our senators. We were told that, call them, email them, write letters, everything is recorded, and the more they hear from us and hear the stories of how important our programs are, the more that we're on their radar, so that when they see the budget line, that they know that we're doing good work, we're making a difference, that they need to renew our funding for support and maybe increase it so we are building relationships. We're particularly grateful to Senator Zwicker and district 16. He led the budget resolution that would reinstate our funding this year, and he made sure that we got the increased funding for the Rutgers clinic. So and we invite anybody to get to check out our website for sample language to use in your letters or your emails. You can write your own letters, but if more they know about our good work, the more they can't cut our funding. Yeah,

Michael Leopold: 24:16

I really want to underscore this, because this was so important, and you can do this no matter where you live. You know, my brother and I were writing letters, and we're outside of New Jersey. We're writing letters to the legislators in New Jersey, but it was a big risk of losing that funding, and that would have impacted the programming that the organization can do. This podcast may have been affected by the Leadership Academy, the walks, pretty much everything could have been touched because it was such a significant amount of money that was at risk of being lost. And it really is a testament to the community that we people were calling in, calling their legislators, writing those letters, they were able to secure that funding again for another year. So it does work. Get involved. Send those messages. Is it really is that team effort. We never want to take our funding for granted here. A lot of us had that scare earlier in the spring that it felt very real. There was a good chance that they just weren't going to get that money. And so I'm thrilled that that didn't happen. It all worked out, but I think it underscores the need for everyone to stay diligent and involved, and, you know, contacting your reps and all of that to keep that going. And actually, on that note, how can our listeners get involved with njcts and support the ongoing work we do? Well,

Hilary Kruchowy: 25:30

we invite you all to help advocate for njcts within the state level. This is our 20th anniversary, as I said earlier. So if you've been involved with us, send us your stories so we can promote you and our where are we now project. It's our 20th anniversary, so we're celebrating on october 17 with our gala. We'd love for everybody to come out, maybe place a journal advertisement recognizing our past 20 years and get involved with our NJ walks for TS event, which is in early May. The campaign goes from March through June, but we will be having an in person walk at the beginning of May. We'll be setting the date in January for that. But we're really trying to diversify our funding make sure that we have a strong fundraising campaign. In case something happens to our state funding, we'll be okay. We'll still be able to operate as we are and do all of the programs that we are doing well, as well as add more to it, more family events, maybe increase the stipends over the Rutgers clinic. Invite more camp families to join us. Have more kids at the Leadership Academy. So we need to diversify our funding. So we welcome you to get involved with us as volunteers for the walk. We're always looking for new board members. We're always looking for more volunteers.

Michael Leopold: 26:46

You know, I assume people who want to stay in the loop on updates and registrations can sign up for the mailing list after our

Hilary Kruchowy: 26:53

mailing list, follow us on your preferred social media site. We're on Facebook, Instagram, Tiktok. We had great success recruiting youth advocates Recently, because of our Tiktok, we also have a really great blog that the youth council members participate in at once a month. They write their experiences. One of our students just went to boarding school, so she talked about that adjustment. Talk about learning to drive dating, the youth council tries to look at different things and try to share their experiences. That's

Michael Leopold: 27:26

great. Any closing remarks to share with our listeners.

Hilary Kruchowy: 27:29

I'm excited to assume this position, and I'm looking forward to meeting as many folks in this community as I can, and promoting TS awareness and fulfilling the legacy of faith and cat dupine before me.

Michael Leopold: 27:44

Wonderful. Well, we're fortunate to have you and looking forward to working with you, to wish you all the best of success in this new role. Thank you to our listeners. Thank you for joining in. Please stay tuned in two Tuesdays from now, we'll launch our next episode. Thank you so much for Thank you for listening to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and associated disorders, njcts, its directors and employees assume no responsibility for the accuracy, completeness, objectivity or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest, nor do we advocate any treatment you