A(z) Williams Syndrome Association csatorna legjobb podcastjai (2024)

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Ep 39 - 15 Minutes of Fame Live from Camp Whispering Trails! 1:28:46

3h ago1:28:46

1:28:46

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…

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Ep 38 - I Got Next! Live at the 2024 WSA Convention 1:02:42

14d ago1:02:42

1:02:42

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…

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S1 E5: Earl Harley, MD Talks About How Otolaryngologists Can Assist in the Treatment of PANDAS 44:53

22d ago44:53

44:53

Earl Harley, MD, FACS, FAAPS is a highly regarded pediatric otolaryngologist (Ears, Nose, and Throat doctor or ENT) at Georgetown University Medical Center and a beloved assistant professor at the Medical School. Dr. Harley is widely respected for his expertise in working with patients who have been diagnosed with PANDAS and PANS. Families travel f…

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Ep 37.75 - Post Convention Podlet 16:20

28d ago16:20

16:20

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…

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Ep 37.5 - It's a Convention Podlet with the Gang! 14:19

2M ago14:19

14:19

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-Ey…

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S1 E4: Beth Latimer, MD Discusses How the Understanding of PANDAS has Progressed: It is Not Solely a Pediatric Disorder 1:06:31

2M ago1:06:31

1:06:31

M. Elizabeth “Beth” Latimer, MD is a pioneer in the field of autoimmune encephalitis and is known across the country and in Europe for her expertise in treating PANDAS and PANS. She received her medical degree from Tufts University School of Medicine in Boston, Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed …

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Ep 37 - Weekend for Williams Live with Barb Nelson and Tayden Larsen 1:06:22

2M ago1:06:22

1:06:22

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 …

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Ep 36 - Defiantly Choosing Joy with Jess Holsapple and Tabitha Toney 1:09:33

3M ago1:09:33

1:09:33

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 shar…

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S1 E3 Part 1: What Do Tick-Borne Diseases Have to Do with PANS? 56:36

3M ago56:36

56:36

Dr. Shannon Delaney, a psychiatrist with expertise in PANDAS/PANS, Lyme, and other vector-borne diseases, talks with Susan Manfull about how these complex disorders present in children and adults. Much of what she came to learn about Lyme came from her work with Dr. Brian Fallon at Columbia University. After her residency at Harvard Longwood Psychi…

1
S1 E3 Part 2: What Do Tick-Borne Diseases Have to Do with PANS? 29:33

3M ago29:33

29:33

In Part 2, the discussion with Dr. Shannon Delaney continues with a focus on the diagnosis and treatment of Lyme and other tick-borne diseases. Recorded May 13, 2024 Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent. Credits: Mu…

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S1 E3 Part 3: What Do Tick-Borne Diseases Have to Do with PANS? 13:22

3M ago13:22

13:22

In Part 3, the discussion with Dr. Shannon Delaney continues on her soon-to-be-released study in Frontiers in Psychiatry Journal about the prevalence of Bartonella in patients diagnosed with Bartonella. Recorded May 13, 2024 Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the vie…

1
Ep 35 - Awarenessing with Clare Neal and Micah Wilgus 45:59

3M ago45:59

45:59

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…

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Ep 34 - Kicking off Awareness Month with Sofia Napoli and Denise Callen 48:59

4M ago48:59

48:59

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 f…

1
S1 E2: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and Andrew 1:06:04

4M ago1:06:04

1:06:04

In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD). Andrew shares his personal experience of how his psoriasis and OCD…

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S1 E2 Bonus: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: Continued conversation with Kyle Williams, MD, PhD and Andrew 15:54

4M ago15:54

15:54

It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversatio…

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Ep 33 - Turning Back the Years with Jen Sellars and Mike Hladish 42:44

4M ago42:44

42:44

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…

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S1 E1:The Immunological Basis of Eating Disorders and PANDAS/PANS 50:15

5M ago50:15

50:15

Lauren Breithaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, will discuss her cutting-edge research about the immunological basis of eating disorders and PANDAS and PANS. After briefly describing her work on eating disorders, she talks about her new researc…

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S1 E1 Bonus: PANDAS/PANS Advocacy Day on Capitol Hill - Join us on April 12, 2024 42:32

5M ago42:32

42:32

In this bonus episode, I will be talking about our second annual PANS/PANDAS Advocacy Day on Capitol Hill, a joint event planned by the National Alliance of PANS/PANDAS Action (NAPPA) and The Alex Manfull Fund (TAMF) to be held on Friday, April 12th in Washington, DC. My guests -- Amanda Peel Crowley, co-founder of NAPPA, and Paul J. Murphy, Treasu…

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Ep 32 - Living, Loving, & Guardianship with Stella Beard and Clayton Carroll 51:51

5M ago51:51

51:51

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 se…

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Ep 31 - Leadership and Whispering Trails with Joshua Dean and Emma Thomas 57:26

5M ago57:26

57:26

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 wh…

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Ep 30 - Joyeux Anniveraire! with Steph Caron and Cyndra Cole 59:52

6M ago59:52

59:52

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 question…

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Ep 29 - Prepping for College with Pascale and Gerald Momplaisir 45:52

6M ago45:52

45:52

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 you…

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Ep 28 - Heart Health Month with Jess Stranz and Benjamin Jacob 50:03

7M ago50:03

50:03

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…

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Ep 27 - The Tale of Alex and Alexandra 1:09:35

7M ago1:09:35

1:09:35

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 disab…

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Ep 26 - Phreezing in Phoenix with Nick, Lindsey, and J Chap! 30:53

7M ago30:53

30:53

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 …

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Ep 25: Sharing Journeys with Anne Lemieux-Pocock, Tobi Akbas, and Hayley Cuccinello 56:43

8M ago56:43

56:43

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…

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Ep 24: Ottenheimer to the Rescue! with Scott Ottenheimer 46:38

8M ago46:38

46:38

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 org…

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Ep 23: Caregiving the Caregivers with Sarah Giddings 48:26

9M ago48:26

48:26

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 s…

1
Ep 22: ’Zona Talk with Nick and Lindsey 42:32

9M ago42:32

42:32

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!!Williams Syndrome Association által

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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 44:23

10M ago44:23

44:23

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! A…

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Ep 20: Gratitude and Gettin’ Fancy with Callie Truelove, Camille and Anthony Filippazzo 51:36

10M ago51:36

51:36

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 i…

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Ep 19: Live from Orlando with the Adventure Seekers 54:47

11M ago54:47

54:47

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.…

1
Ep 18: Volunteering with the Gang 48:23

11M ago48:23

48:23

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 podcast@william…

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Ep 17: Back to School with Michelle Self 41:52

12M ago41:52

41:52

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 …

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Ep 16: Camp and Speech with Kayla Patak and Bianca Corozzo 46:28

12M ago46:28

46:28

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 individ…

1
Ep 15: LIVE FROM CAMP with the gang! 39:21

1y ago39:21

39:21

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 epis…

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Ep 14: Team USA and Team Teachers with Maddie Woo, Cassandra Davide, and Kim Scheier 49:08

1y ago49:08

49:08

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 fo…

1
Ep 13: 7q11.23 Day with Kieran Devin Johnson and Jocelyn Krebs 49:48

1y ago49:48

49:48

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…

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Ep 12: The Birch Family 41:57

1y ago41:57

41:57

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 sho…

1
Ep 11: Tyler Levy and Dr. Barbara Pober 42:33

1y ago42:33

42:33

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 …

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Ep 10: Singing Pretty with Mariella Elm, Tommy Barbarella, and Kristen Van Handel 45:27

1y ago45:27

45:27

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 Cr…

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Ep 9: Back in Time with Dr. Marty Levinson & Coco and Aaron Lombard 47:02

1y ago47:02

47:02

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 …

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Ep 8: Gorgeous Donuts with Melanie Côté & Joanne and Morgan Jane Starkman 46:40

1+ y ago46:40

46:40

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 a…

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Ep 7: Gettin’ Smart with Robin Pegg and Amy Nussbaum 45:44

1+ y ago45:44

45:44

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…

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Ep 6: Smiling with Producer Joel and Kristen Cagadas 45:08

1+ y ago45:08

45:08

With Steph under the weather, Producer Joel steps in to co-host with Jen! They talk about his work with the WSA and being a dad of a kiddo with WS. Then they talk to author and awesome WS mom, Kristen Cagadas, about moving cross-country with a young family, finding your community, and her book: Elsie with the Great Smile: A First Look at Williams S…

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Ep 5: Family Time with Sarah Dubois and Stella Keeton 45:32

1+ y ago45:32

45:32

It's a family affair as Stephanie welcomes her sister Sarah and Jennifer welcomes her daughter, Stella! The group talks about growing up as a sibling of someone with WS and how that eventually informed Sarah's career as a Special Education Teacher. Sarah lets us all in on a secret about being related to a person with a disability that sometimes mak…

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Ep 4: Lookin’ Good with Kate Bierfeldt and Jessica Connor 46:38

1+ y ago46:38

46:38

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 podcast@williams-syndrome.org. For mo…

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Ep 3: Chaos and Kindness with Jimmy Luv, Big Jim, and Justin Spencer 46:52

1+ y ago46:52

46:52

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 betwee…

1
Ep 2: Jake Morel and WSA President Cyndra Cole 36:38

1+ y ago36:38

36:38

This week Steph and Jen talk to Jake Morel from San Diego. He talks about working and the importance of music in his life. Then the show welcomes Cyndra Cole, the President of the WSA's Board of Trustees. She discusses the role of the Board and how her family is preparing for her daughter's transition to adulthood. Email us at podcast@williams-synd…

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Ep 1: Here We Go with Brendan Lemieux and Dr. Mary Van Haneghan 38:39

1+ y ago38:39

38:39

For this inaugural episode, Jen and Steph welcome Brendan Lemieux and Dr. Mary Van Haneghan. Brendan is an adult with Williams syndrome and he also serves on the WSA Board of Trustees. Dr. Mary is the current Executive Director of the Williams Syndrome Association. Contact us at podcast@williams-syndrome.org.…

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Williams Syndrome Association Podcastok

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