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The Starry-Eyed Effect Profile

The Starry-Eyed Effect

English, Cultural, 1 season, 46 episodes, 1 day, 12 hours, 48 minutes
About
Presented by the Williams Syndrome Association, the Starry Eyed Podcast will explore the joys and challenges of living with Williams syndrome, a rare genetic disability. Each episode will feature interviews with adults with WS and professionals and caregivers who are dedicated to raising awareness and resources.
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Ep 43 - Fight for Your Rights with Delaney O'Connell and Chad Wilson

Today's show exercises our civic duty as Jen and Brendan are joined by Delaney O'Connell, who is featured in the documentary Patrice, about a couple trying to fight the system that won't let them marry. On this show, we get to hear Delaney's story and how important self-advocacy is to her. Then we are joined by Chad Wilson from the Minnesota Disability Law Center to talk about how to make sure your voice is heard at the ballot box. Whether it's transportation issues or understanding what is on the ballot, Chad shares some resources and tips on how to make your voting experience successful. For more voting resources, go to https://www.williams-syndrome.org/resources/voting-resources
10/22/202450 minutes, 34 seconds
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Ep 42 - Old Friends/New Challenges with Seth Link and Lisa Elm

Croutons and Hearts, my friends! This episode, Brendan introduces us to one of his longest and best friends: Seth Link. Seth tells us all about balancing the stress of his job with the rest of his life and how important the connection between friends is to him.  Then we are joined by Lisa Elm who manages PACER's National Bullying Prevention Center. We also get into the huge part she's played in the creation of The Girl Who Cried Different by previous guests Tommy Barbarella and Mariella Elm (spoiler: she's Mariella's mom). I say we, because Producer Joel pops in when Jen has some heat related internet issues. But hey! That's the way the cookie crumbles. Like and subscribe and leave us a review here or on the video version on YouTube!  
10/8/20241 hour, 10 minutes, 15 seconds
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Ep 41 - Staying Busy with Leo Ryan

After plotting a mob-like takeover of jobs at Disney, Jen and Brendan are joined by Leo Ryan! He took brief break from doing seemingly everything to chat about working, volunteering, and giving back to the younger members of the WS community. You can look for him probably zooming from activity to activity on the WSA Adventure Seekers cruise next summer! Reach out to us at [email protected] for information about anything you heard on the show or to let us know you want to be interviewed!
9/24/202437 minutes, 30 seconds
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Ep 40 - Back to It with Joelle Packard and Robin Pegg

It feels like an eon since we did a "regular" podcast, but here we are! Brendan is sandwiched between Producer Joel and Joelle Packard - who tells us all about her experience in college. Back-to-School continues with Robin Pegg joining Jen and Brendan to really get into the nuts and bolts of how students with Williams syndrome learn. The materials Robin references are found here: https://www.williams-syndrome.org/featured-education-resources
9/10/20241 hour, 16 minutes, 20 seconds
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Ep 39 - 15 Minutes of Fame Live from Camp Whispering Trails!

Jen and Producer Joel are live at the WSA's Whispering Trails Camp for the Teen Camp's "15 Minutes of Fame" Talent Show! Join them as they channel their inner Gail and John from Pitch Perfect and provide commentary and cheers for the performers.  Honestly I don't know if this show will be any good on audio, but we had a lot of fun recording it and I wanted to give people a taste of what WSA Camp is all about! Video version available over on the WSA page on YouTube.
8/20/20241 hour, 28 minutes, 46 seconds
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Ep 38 - I Got Next! Live at the 2024 WSA Convention

Recorded live in Phoenix at the 2024 WSA National Convention, Jen, Brendan, and Producer Joel welcome Emmy Coggshall and Chris Baxter to discuss their upcoming movie "I've Got Next" and the aspiration of inclusivity in front of and behind the camera. Then Gianna Morello joins the gang to talk about being on the Board of Trustees and a leader in the WS community.
8/6/20241 hour, 2 minutes, 42 seconds
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Ep 37.75 - Post Convention Podlet

Brendan got sick. Jen got sick. Joel got sick. A good time was had by all! The 2024 WSA Convention in Phoenix was a rousing success. Unfortunately the live podcast footage hasn't been delivered yet, so that will be released at a later date. Meanwhile, an exhausted Brendan and Joel do a quick recap of the Convention and look ahead to future episodes! Thank you to everyone who said HI to us at the convention.
7/23/202416 minutes, 20 seconds
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Ep 37.5 - It's a Convention Podlet with the Gang!

The time has come! Preparations for the 2024 WSA National Convention in Phoenix are in the final stretch. The gang has just a few minutes to get together, do some last minute chatting, and get ready for the Live Podcast show on Wednesday, July 10th at 4PM! If you come up to any of us and say "Croutons & Hearts," we'll give you an official Starry-Eyed Podcast sticker!
7/2/202414 minutes, 19 seconds
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Ep 37 - Weekend for Williams Live with Barb Nelson and Tayden Larsen

Recorded Live on June 1st, Jen and Brendan and joined by Producer Joel and WSA Vice President of Programming Sarah Giddings during their marathon Weekend for Williams fundraiser. The podcast was also part of a POWER HOUR where all donations were doubled thanks to Barb Nelson, the owner of Brinkley's Boutique. Barb joined the gang to talk about all the different ways Brinkley's Boutique raises awareness and money for the WSA throughout Williams Syndrome Awareness Month. Finally, the gang is joined by Tayden Larsen fresh from the job site working with his brother's roofing company. It's not too late to donate. Go to WeekendforWilliams.org to donate or text WEEKEND to 71777.
6/11/20241 hour, 6 minutes, 22 seconds
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Ep 36 - Defiantly Choosing Joy with Jess Holsapple and Tabitha Toney

During Williams Syndrome Awareness Month, it's important to recognize that, while our community has much to celebrate, there are also some very real challenges and tragedies. Jen and Brendan are joined by Jessica Holsapple and Tabitha Toney, two mothers who each lost their young boys from complications with Williams syndrome. Jess continues to share her journey with Griffin at Life in Griffinland on Instagram and TikTok, and on Facebook. In addition to training the next generation of nurses, Tabitha serves as the camp nurse for the WSA's yearly summer camps for kids and teens in Georgia. We thank them for their honesty and vulnerability in sharing their stories with us. Please join us on May 31st and June 1st for the Weekend for Williams fundraiser where we are turning Awareness into Action. For more information and to donate to fund WSA programs and research, go to weekendforwilliams.org.
5/28/20241 hour, 9 minutes, 33 seconds
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Awarenessing with Clare Neal and Micah Wilgus

We're well into Williams Syndrome Awareness Month, and Jen and Brendan are joined by Clare Neal, whose niece spearheaded a fundraising effort with her dance troupe. After that, they're joined by Micah Wilgus, who is celebrating his 10th year of work at  @McDonalds  and is a tremendous advocate for Williams syndrome. Producer Joel also gives an update on his son Bennett's Chili Pepper Fundraiser which happened live on Facebook this past weekend!
5/14/202445 minutes, 59 seconds
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Ep 34 - Kicking off Awareness Month with Sofia Napoli and Denise Callen

It's May, which means it's Awareness Month!  Kicking the bleep out of the start of Awareness Month is Sofia Napoli. She joins Brendan and Producer Joel (filling in for Jen) to talk about the importance of advocating for yourself and to pump everyone up for this month's activities. Then Jen and Brendan are joined by Denise Callen, Director of Walks for the WSA, to talk about what is different this year with the Fundraising Walks and the importance of Walk Chairs. The money we raise from Walk for WS's is vital to the operation of the WSA! So grab a bowl of croutons and prepare for Williams Syndrome Awareness Month! 
4/30/202448 minutes, 59 seconds
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Ep 33 - Turning Back the Years with Jen Sellars and Mike Hladish

In this episode, Jen and Brendan are joined by Jen and Mike...wait, that sounds confusing. Our hosts are joined by Jen Sellars (teacher and mom to a daughter with WS) and her friend Mike Hladish. They share their amazing story of growing up and reconnecting in a different part of the country that should warm your heart! We would like to acknowledge the wonderful organization Just People (https://www.justpeople.org/) where Mike lives. The 60 Minutes story referenced in the interview can be seen on the WSA Media and Entertainment page. Producer Joel would like to thank Toto's Steve Lukather, Joseph Williams, and the rest of the band and crew for an amazing show and generous kindness toward Bennett (their number 1 fan!)
4/16/202442 minutes, 44 seconds
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Living, Loving, & Guardianship with Stella Beard and Clayton Carroll

In this episode, Jen and Brendan hear the fantastic and fascinating story of Stella Beard and Clayton Carroll. The mother and son duo discuss the tricky navigation of post-high school life and their journey from total guardianship to supported decision-making.  Learn more about Clayton Carroll by searching "Clayton Carroll Speaks" on Facebook and search for Clayton Carroll on YouTube. Reach out to us at [email protected]  
4/2/202451 minutes, 51 seconds
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Ep 31 - Leadership and Whispering Trails with Joshua Dean and Emma Thomas

Producer Joel joins Brendan as they interview Joshua Dean, an adventurous camper, hard worker, and fantastic leader fresh off his latest week in Georgia at Camp Blue Skies. Then, Jen and Brendan talk to Emma Thomas, Camp Director of Whispering Trails Therapy Camp and Teen Camp. Registration for the 2024 camp in July opens soon, and Emma tells us why the camp experience can be incredibly beneficial to our kiddos! Check out Camp Whispering Trails information at www.williams-syndrome.org/camps, or email [email protected] Email the pod at [email protected]  
3/19/202457 minutes, 26 seconds
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Ep 30 - Joyeux Anniveraire! with Steph Caron and Cyndra Cole

It's our 1-year extravaganza! Thanks so much to all of you for tuning in and supporting our show. To celebrate, we are joined by OG co-host Stephanie Caron to update us on how she's doing and reflect on what starting the podcast has meant to her. Then Cyndra Cole, former WSA Board President and Episode 2 guest, turns the tables and asks us questions received from the audience! Cheers to many more years to come! Would you or your business like to sponsor The Starry-Eyed Podcast, please contact us at [email protected]
3/5/202459 minutes, 52 seconds
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Ep 29 - Prepping for College with Pascale and Gerald Momplaisir

It's the last show of Year 1 of The Starry-Eyed Pod! Jen and Brendan are joined by Gerald and Pascale Momplaisir from Baltimore, MD. This Dad and Daughter Duo shares the excitement and opportunities of preparing for life after high school and getting ready for college. Pascale also gives us some insight into the particular challenges of being a young woman of color with a disability while Gerald (and his wife, Tara) navigate being parents trying to protect and do what's best for her and their other kids. Got a question for the 1-Year Anniversary Show? Email us at [email protected]!
2/20/202445 minutes, 52 seconds
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Ep 28 - Heart Health Month with Jess Stranz and Benjamin Jacob

Hey, look! We're so fresh and so clean! There is a new logo and new visuals, but it's the same awesome show! First up is Jessica Stranz, an adult with WS from Michigan, sharing with Jen and Brendan her love of bowling, antiquing, and planes! Her journey with Williams syndrome is really wonderful! Then, for Heart Health Awareness month, we're joined by Benjamin Jacob, who turned growing up with a brother with WS into a career caring for all kinds of hearts - including running the Williams syndrome clinic at Texas Children's Hospital. You can find more information about TCH at https://www.texaschildrens.org/departments/williams-syndrome-clinic. Hope you enjoy the show. Like, subscribe, leave a comment - all the things!
2/6/202450 minutes, 3 seconds
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Ep 27 - The Tale of Alex and Alexandra

Hark! Come gather ye round to hear the tale of Alex and Alexandra, who live lives touched by Williams syndrome! The show is joined today by Alexandra Reneer, an adult with WS living in Utah. She shares with us how being a dancer has allowed her to stay physically healthy and gives her the confidence to teach dance to others with developmental disabilities! Then we're joined by Alex Chiarappa. She is the mother to 5-year-old Collins and almost 2-year-old Jax, who has WS. She shares their journey through these first couple of years and how she uses Yoga to center herself and find mindfulness through stress. Her 2nd annual Stretch into Rest Fundraiser is coming up soon. More information HERE.
1/23/20241 hour, 9 minutes, 35 seconds
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Ep 26 - Phreezing in Phoenix with Nick, Lindsey, and J Chap!

The WSA team is in Phoenix, AZ, doing more prep work for the upcoming WSA Convention, July 9-13, 2024, at the Downtown Hyatt Regency Hotel. Since the room block will be available for reservations starting Wednesday, January 10, we thought it would be a good time for more convention talk! Nick and Lindsey are back to talk about how preparations are coming. Then Jen is joined by Jen...Jen Chaplin, the WSA Convention Czar, who is handling all the logistics here in Phoenix!  If you want to see the video version of them touring the hotel, please check out the video version of the podcast available at https://www.youtube.com/@Williams-syndromeOrg. Questions about the convention? Email [email protected]
1/9/202430 minutes, 53 seconds
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Ep 25: Sharing Journeys with Anne Lemieux-Pocock, Tobi Akbas, and Hayley Cuccinello

Happy Holidays from all of us at The Starry-Eyed Effect! It's a very special episode as we're joined by Anne Lemieux-Pocock, who, in addition to being Brendan's mom, is an accomplished writer. She's sharing her journey of being a mom to an individual with WS in beautiful chapters called "Being & Becoming: A Williams Syndrome ‘Mom-oir'” available at https://medium.com/@annelemieuxpocock. Then we're joined by Tobi Akbas and Business Insider writer Hayley Cuccinello to talk about a fantastic article available now at https://www.businessinsider.com/what-its-like-williams-syndrome-living-loving-strangers-2023-12.   Thank you all so much for joining us in our first year of the show. We can't wait to bring you more stories in 2024! Email us at [email protected]
12/26/202356 minutes, 43 seconds
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Ep 24: Ottenheimer to the Rescue! with Scott Ottenheimer

Look...did I have a whole other episode planned and then couldn't get it scheduled and was bailed out by awesome Board member Scott Ottenheimer? Maybe, but we were always going to have Scott as a guest! As his time on the WSA Board of Trustees comes to a close, Scott talks to Brendan and Jen about his time serving the WSA and how it has set the organization up for the future! As a community, we are so lucky to have amazing people like him advocating for not only what he is passionate about but what is going to be best for our entire WS community. Thank you, Scott, for your leadership!  
12/12/202346 minutes, 38 seconds
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Ep 23: Caregiving the Caregivers with Sarah Giddings

In this episode, Jen, Brendan, and Producer Joel delve into the crisis in this country surrounding parents and caregivers of individuals with developmental disabilities - specifically Williams syndrome. After watching the documentary "UNSEEN: How We're Failing Parent Caregivers & Why It Matters" (which you can watch at www.caregiverdoc.com), they share their reactions for the first time in the recording.  Then, WSA Vice-President of Programs and Services, Sarah Giddings, joins to talk about how the WSA makes an intentional effort to provide education and resources to our community in an effort to alleviate the stress felt by parents and caregivers. She also shares her experiences as a parent to Matthew, her son with WS. We hope that this episode helps spark conversations about how this country can do better for families and caregivers. Also, please check out the 2023 WSA Holiday Gift Guide this giving season.
11/28/202348 minutes, 26 seconds
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Ep 22: ’Zona Talk with Nick and Lindsey

Brendan joins from Austin, TX, where he just wrapped a weekend of working with the WSA Board of Trustees. What is that like? Well, he tells us. Then Jen and Brendan talk to Lindsey and Nick about planning the 2024 WSA Convention in Phoenix, AZ! Look out for Haboobs!!
11/14/202342 minutes, 32 seconds
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Ep 21: The Spooky Oooky Effect with Megan, Julie, Marty McFly, a Cloud, and Professor Dilo Ph’Saurus from the Planet Spielberg

Make sure the little ones are off to dreamland because this week, Jen and Brendan have terrifying tales of horrors, hayrides, and haunted houses! Joining the show is Megan McNeil and Julie Polansky to share everything they love about this ghoulish holiday. Then the gang gets together to bust some myths about Halloween and about Williams syndrome! Are you brave enough to listen?! Mwaaaahahahahahahahahahahahah!!!! 
10/31/202344 minutes, 23 seconds
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Ep 20: Gratitude and Gettin’ Fancy with Callie Truelove, Camille and Anthony Filippazzo

Dust off your finest prêt-à-porter cause we're going to the society pages! Jen and Brendan catch up with Callie Truelove to share gratitude for red carpet premieres, celebrating stories, and everything surrounding the release of Truelove: The Film. Then, Joel joins Brendan to talk to Camille and Anthony Filippazzo about building community and the importance of medical research into WS with the AF Research Grant. Think of how good Joel would look in a little "off-the-shoulder number" at the "A Night of Love, A Celebration of Life" event on November 3rd in Brooklyn, NY. As Walter Winchell used to say at Sardi's, "Cowabunga!"
10/17/202351 minutes, 36 seconds
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Ep 19 - Live from Orlando with the Adventure Seekers

Producer Joel is live in Orlando with the Adventure Seekers (the group of adults (18+) with WS. This trip was a couple of years in the making, with around 150 individuals with WS and their parents/caregivers descending on the Drury Plaza Hotel in Orlando, FL. Jen and Brendan chat with about a half-dozen attendees about what this trip means to them. Enjoy!
10/3/202354 minutes, 47 seconds
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Ep 18: Volunteering with the Gang

Producer Joel joins Jen and Brendan for an old-fashioned hang where they talk about all the events going on with the WSA and with all the amazing volunteers around the country. From hosting events to becoming part of the WSA Board of Trustees, there are many ways to get involved. Interested in helping out the WSA? Reach out to us at [email protected].
9/19/202348 minutes, 23 seconds
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Ep 17: Back to School with Michelle Self

It's a very special "Back to School" episode! WSA Educational Consultant Michelle Self joins us to discuss all things IEP and class inclusion! She shares examples from her own life with her son, Alex, and her work with Jen's family. From calling IEP meetings to figuring out what "class inclusion" looks like for your child, Michelle is available to answer your questions at [email protected] Due to the importance and complexity of Individualized Education Programs, the entire episode is dedicated to this discussion. Contact the podcast at [email protected] and join the discussion on the Starry-Eyed Effect page on Facebook.
9/5/202341 minutes, 52 seconds
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The Starry-Eyed Effect Podcast Ep 16

We're back from camp, recovered from Covid, and gettin' ready for school! Today, Kayla Patak joins Brendan and Jen to talk about Whispering Trails Camp and how she uses that experience to prepare for the new school year. Then, Speech Pathologist Bianca Corozzo discusses her new consultancy with the WSA and how she hopes to help families and individuals with WS find tools to become stronger communicators. You can reach her at [email protected] or go to https://www.williams-syndrome.org/consultants-and-partners to learn more and follow the link to schedule a session with her.
8/22/202346 minutes, 28 seconds
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The Starry-Eyed Effect Podcast Ep 15

Live from Camp!! This episode was recorded on July 31st live from Camp Twin Lakes in Rutledge, Georgia, at the WSA's Whispering Trails Therapy and Teen Camp. Producer Joel and Jen went live on Facebook with Brendan (at his headquarters in CT) to introduce everyone to the fantastic facility we enjoyed (despite the heat). While we promised a new episode, Joel got covid, preventing him from finishing it. Meanwhile, enjoy this rebroadcast of Live from Camp!
8/9/202339 minutes, 21 seconds
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The Starry-Eyed Effect Podcast Ep 14

Have you read the article on the young woman from Oregon with Williams syndrome who competed in Dressage in France at the Virtus Global Games? Oh you have? That's great because this week Jen and Brendan interview Maddie Woo and her dad, Aaron, about her experience and everything she overcame to make that dream happen. Then Producer Joel steps in for Jen (who is very busy) to interview Cassandra Davide and Kim Scheier, team teachers from New York who share their experience running an inclusive classroom that included a student with Williams syndrome.
7/25/202349 minutes, 8 seconds
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The Starry-Eyed Effect Episode 13

It's 7q11.23 Day! Jen and Brendan are joined by Kieran Devin Johnson, a young man from the Denver area who loves both paintball and  @Southwest  Airlines! Seriously,  @Southwest  , you must give this guy a listen! The Geneticist and WS Mom Jocelyn Krebs teaches Jen and Brendan about the importance of 7q11.23, what it means, and her wonderful artwork to help us celebrate this once-a-century event!
7/11/202349 minutes, 48 seconds
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The Starry-Eyed Effect Episode 12

As Jen was returning home from her trip to Rhythm Nation, Joel and Brendan caught up with Steph to talk about the exciting developments going on in her life. Then, Brendan and Jen talk to Victoria and Alexandra Birch (thebirchfamilyllc.com) about their life on social media and their mission to spread kindness to everyone! Got a question for the show? Write us at [email protected]
6/27/202341 minutes, 57 seconds
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The Starry-Eyed Effect Episode 11

Whew! Jen and Brendan are back after a week off recovering from Awareness Month! This week, Tyler Levy from Louisville, KY, joined them to discuss the importance of workplace inclusion, community support, and self-advocacy. He's followed by Dr. Barbara Pober, who has been at the forefront of genetic research and care for Williams syndrome for over 40 years. Her tireless work to understand WS continues today, seeing patients and conducting studies on all aspects of the WS lifespan.
6/13/202342 minutes, 33 seconds
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The Starry-Eyed Effect Episode 10

You know the song that you hear at the beginning of every episode? Our first guests, Mariella Elm and Tommy Barbarella, wrote that song. Mariella is 17 and has Williams syndrome, and her dad has been a professional musician for years, playing with such artists as the Jonas Brothers and Prince! They join us to discuss their musical, "The Girl Who Cried Different." Next, Kristen Van Handel talks to us about working for make-up giants Sephora and knowing that beauty can come in all kinds of packages! Did I mention Stella's back for a bit? Oh yeah, she's back!
5/30/202345 minutes, 27 seconds
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The Starry-Eyed Effect Episode 9

This episode is going back in time with Dr. Marty Levinson! He sits down with Jen (with Stella!) and Brendan to talk about Williams syndrome's early days and the WSA's beginnings. Then they are joined by Coco and Aaron Lombard, a sister and brother team from Phoenix (by way of New Orleans). They discuss finding Williams syndrome resources later in life and what it was like finally finding community! Write us at [email protected] and don't forget to like and subscribe! The video version is available on the WSA YouTube channel and on The Starry-Eyed Effect group on Facebook.
5/23/202347 minutes, 2 seconds
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The Starry-Eyed Effect Episode 8

This week, episode 1 guest Brendan Lemieux is now episode 8 guest host! He and Jen talk to the President of the Canadian Association for Williams Syndrome (CAWS), Melanie Côté, about her journey to create real job opportunities for people with developmental disabilities by creating her own donut shop, Do Good Donuts. Then they're joined by Joanne and Morgan Jane Starkman. Joanne and her husband created Innersense Organic Beauty, a line of all-natural haircare products. Morgan is the Director of Joy for Innersense and once you meet her, you'll see why! Reach out to us at [email protected] and follow us on our Facebook page! Rate and subscribe to our channels on YouTube and Apple Podcasts - or wherever you get your podcast delights!
5/16/202346 minutes, 40 seconds
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The Starry-Eyed Effect Episode 7

Steph is back!! She makes a brief appearance to give an update on her health and what's going on in her life! Then Jen and Producer Joel talk with WSA Educational Consultant Robin Pegg about the work she's doing to change how we think about education and our young people with Williams syndrome. Then they talk to Amy Nussbaum, mother of 4 (including Libi, who's 5 and has Williams syndrome), advocate, and member of the WSA Board of Trustees, about spreading awareness of WS in the month of May and her work to increase diversity, equity, and inclusion in our community.
5/9/202345 minutes, 44 seconds
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The Starry-Eyed Effect Episode 4

Jen and Steph have barely recovered from last week's episode, but they are excited to welcome Kate Bierfeldt from Massachusetts, to talk Broadway Musicals and friendship! Then they're joined by Outshine Labels founder and CEO Jessica Connor to talk about raising awareness through shirts and apparel! Email us at [email protected]. For more on Outshine Labels, go to www.outshinelabels.com
4/11/202346 minutes, 38 seconds
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The Starry-Eyed Effect Episode 3

This week is an extra special, extra large, extra energy show! Jen and Steph welcome Jimmy Luv and his dad, Big Jim, to the show to talk about life with Williams syndrome and spreading joy and happiness through his work with Chaos and Kindness! Bonus Treat: Justin Spencer from Recycled Percussion drops in to talk about the special friendship between his family and Jimmy! Email us at [email protected]
3/28/202346 minutes, 52 seconds