Extra Lucky Podcast

No matter which way you voted, you've probably been inundated with information about what is going to change. Taryn had the benefit of being on a call with the National Down Syndrome Advocacy Coalition (part of the National Down Syndrome Congress), and we are downloading all the information to you! While this information was from a Down syndrome organization, it's really applicable to disability rights in general, so we hope that our community will find it helpful. In this episode, we talk about signing up for Advocacy Action Alerts. You can do so at this link. Stay in touch with us @extraluckymoms, @tarynlagonigro and @jessquarello, where we'll keep you informed as always! The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

A much needed update on 2024, Season 2 and the future of ELM 💜

We are beyond excited to drop our interview with the incredible Ella Green on the Extra Lucky Podcast!  Ella is a future special education teacher currently studying at Purdue University and the powerhouse host of the From Label to Able podcast.  Her journey into advocacy began early, inspired by her inclusive education and the amazing peers she met along the way.  Ella's passion for creating change in the disability community is truly inspiring, and we can’t wait for you to hear her story!  Don't miss out on this powerful conversation with a young advocate who's making waves!  You can learn more about Ella and her work on Instagram @from.label.to.able The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

Once we wrapped recording today’s episode, we knew we had to air this around Back-to-School season. An educator for 14 years, Kasey Hilton is passionate about inclusion in her classroom. She believes that in the disability community we ask people with disabilities to alter who they are and "fit in" with their peers, when perhaps, we should be teaching others how they can be inclusive and kind by learning what they can do to make sure everyone is welcome and accepted. Woven in this conversation around education is also the story of a mom who was the first patient to undergo fetal surgery for Spina Bifida in the state of Michigan.  Kasey Hilton is a published author, speaker, and advocate in the disability community. She is a mom of two boys; both who receive special education services. Currently Kasey is using her platform and experience teaching to support families as an advocate for the Arc which is a National Nonprofit that supports people with disabilities. She assists families through the IEP process to ensure that students are getting what they need to be their most successful and authentic selves. You can find Kasey on Instagram @almostsavedbythebell and @kaseys_corner_  The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

We had the chance to get to know Dr Michelle Sirak when she reached out after ELM presented to Hackensack University Medical Center Pediatric Grand Rounds. As parents, all we want while raising our kids is for our medical teams to listen to us. Dr Sirak walks the road with her families and we think her philosophy will inspire both parents to find their voice and other doctors to lean into the knowledge of parents as part of the medical team. We are grateful that doctors like her exist and that she works in a hospital system that fosters that environment.  After completing college at Rutgers University and medical school at UMDNJ-Robert Wood Johnson Dr Sirak went on to complete her residency in physiatry at Columbia and then specialize in pediatrics through an additional 2 year fellowship at Montefiore Medical Center.   Dr Sirak currently leads the pediatric physical medicine and rehabilitation department at the Joseph M Sanzari Childrens Hospital at Hackensack Meridian Health.  With more than a decade of experience, Dr. Sirak specializes in helping patients achieve their maximum ability and mobility.  The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

In this episode of the Extra Lucky Podcast, you’ll get to know pediatric occupational therapist Lora Jackle. Not only does Lora have an incredible perspective on patient and family care, but her personal story is one we are so grateful we get to share. As a single woman in her early 20s, Lora fostered then adopted a child with infant leukemia. In later years, she subsequently welcomed two more daughters, one of whom was born with Down syndrome. Don’t miss this story, interwoven with resilient and serendipitous moments.  About Lora: Lora Jackle is a pediatric occupational therapist and a manager of a busy outpatient rehabilitation services team at a large hospital in Virginia. She is a graduate of the Virginia Partners in Policymaking program, and as such is a trained Virginia advocate for people with disabilities. She is the mom of three awesome girls (Marz, Riley, and Abby) and is passionate about raising self-advocates. Lora lives in Virginia with her husband, 3 girls, and her mom. She loves traveling and hopes to empower all three of her girls to explore the world!  You can find Lora on Instagram @loraot. You can also find a beautiful take on her story in the book Dear Mama: Stories of an Extra Lucky Life. The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

Our community is no stranger to Michelle Fruhschien. She’s joined us on the Today Show, written for Dear Mama: Stories of an Extra Lucky Life and is one of ELM’s biggest cheerleaders. We think what resonates so much with us about Michelle is her honesty, her ability to laugh through stressful times and her fierce advocacy for Jordan’s syndrome and the disability community at large. This episode has all of that, and we know you will love it! Michelle Fruhschien is a mother, wife and special educator. She started her advocacy website and social media handles to bring more awareness to her daughter and peers with a rare disease, Jordan's Syndrome. As a special educator, it blossomed into a larger umbrella and speaking out and bringing light to disability in general. Life can be hard, so also bringing humor into our every day struggles is a way that Michelle finds silver linings. You can find Michelle on Instagram @mamabearforrare and her website ⁠www.mamabearforrare.com⁠. You can learn more about Jordan's Syndrome @jordansguardianangels or at www.jordansguardianangels.org. The Extra Lucky Podcast is produced by Andie Amit of ⁠⁠Sprouting Productions⁠⁠. 

Imagine getting a surprise birth diagnosis of Down syndrome and then three weeks later finding out your baby has cancer. That was Rachel Morris' reality just over a year ago. This episode hits so many feels - from grief, cancer, healing and finding the joy. Lora Jackle, ⁠Dear Mama⁠ contributor, Occupation Therapist, cancer AND Down syndrome mama, joins Taryn as co-host for this impactful episode.  Rachel is a stay at home, homeschooling mom to 3 girls. In April of 2023, her third daughter was born and rocked her entire world. They found out the night of her birth that she has Down Syndrome. In the weeks to come they also discovered she had stage 3 cancer and immediately completed 4 rounds of chemotherapy. This experience helped Rachel find her own voice as she advocated for her daughters health and quality of life. She has found healing through sharing about the initial depth of grief and connecting with other parents navigating medical and/or disability parenting. She hopes that through being honest and open about her journey, other parents can know they are not alone through their darkest days. You can find Rachel on Instagram @rach.mo The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

If you're looking to talk about disability sibling relationships, mental health, disability diagnosis and motherhood, then WOW this episode is for you. Taryn interviews Kara Kushnir on Episode 19 of ELP. Kara is a parent, sibling and psychotherapist in northern NJ, specializing in perinatal mental health as well as working with children, teens and parents. She grew up with a younger sister with disabilities, and went into the field of mental health to support other families impacted by chronic illness, disability, trauma and the challenges that can arise from those lived experiences. She is also a mom to a child with disabilities, and as a former child study team case manager turned private practitioner and advocate, she aims to "support parents to parent" from a place of knowledge and empowerment. Kara also serves on the board of Postpartum Support International NJ, and formerly served on the NJ Council on Developmental Disabilities, and is very involved in advocacy work around maternal mental health and disability. You can learn more about Kara at her website or on Instagram @aworkofheart_counseling. The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In honor of July being Disability Pride Month, we are so excited to bring you a conversation with longtime advocate Jawanda Mast. Jawanda Mast is the NDSC Grassroots Advocacy Manager. She has been involved in disability policy advocacy since her daughter Rachel was born with Down syndrome almost 25 years ago. Jawanda has graduate and undergraduate degrees from the University of Arkansas and was honored with the 2017 Alumni Community Service Award for her body of advocacy work.  She and her daughter Rachel spent eight years advocating for the passage of the federal ABLE Act and have spoken around the country on ABLE, Advocacy, and Inclusion. Her daughter Rachel opened the first Kansas ABLE Account. She has provided written and oral testimony on a variety of federal and state policy issues and has served on many state-appointed committees.  Jawanda believes we all have a story and we can use those stories to impact change at all levels. She is passionate about the meaningful inclusion of individuals with Down syndrome and other intellectual disabilities in all aspects of the community and has presented at many conferences.  Jawanda says her work is a #laborofloveandconviction.   You can find Jawanda @sassysutherngal (Twitter), www.thesassysoutherngal.com, @thesassysoutherngal (IG and Threads), and www.ndsccenter.org.  In this episode, we talk about ABLE Accounts. You can head to the Able National Resouce Center at https://www.ablenrc.org to learn more and find links by state to open an account. 

Today we are joined by Yamira Siu as we talk disability, being a working parent and creating inclusive spaces, including in the corporate world.  Yamira Siu is an Executive Assistant at a French Investment Bank in NYC with 25+ years of experience across various business lines within the firm. She is also the Co-President of the firm's Diverseabilities Employee Resource Group (ERG), and the Co-President of a non-profit organization (Gigi’s Playhouse NYC) within the Down syndrome community where she volunteers 100% of her time and her teenage son is a long time member. On October 19, 2022, Yamira was awarded a Certificate of Recognition by Senator Cordell Cleare, New York State Senate, 30th Senate District, for her Dedication, Leadership, and Service to GiGi’s NYC – Down Syndrome Achievement Center. Yamira is passionate about creating impactful change and connecting people throughout communities regardless of race, beliefs, religion or political affiliation. You can learn more about Gigi’s Playhouse at www.gigisplayhouse.org. 

Throughout The Extra Lucky Podcast, we want to provide "Quick Wins" episodes that are short & sweet, have a quick way of learning something or maybe getting a brain break. On this episode, in honor of International Day of Yoga, ELM co-founder Taryn Lagonigro guides us through a 5 Senses Meditation. Taryn is a certified yoga instructor, meditation coach and co-owner of Iris Yoga in Bloomfield, NJ. This mediation is accessible for those who may be new to meditation and is the perfect way to ground yourself in a variety of situations. Learn more about Iris Yoga at ⁠www.irisyoganj.com⁠ or by searching on the FitDegree app. Iris is offering a 10% off code for anyone wanting to take their in-person or virtual classes. You can use code POD10 at checkout for the discount.

For some episodes, it feels important to bring in the experts, and as we were planning our Father’s Day episode, we felt that there was no better person to interview an extra lucky dad than another extra lucky dad. Our friends Danny Jordan and Brady Murray are two incredible dads, not simply because they have children with disabilities, but because of how beautifully they have stepped into advocacy in their honor. Both have created organizations and projects that we know will leave this world a better place, and we are so grateful to both of them for taking time out of their very busy lives for our show.  This episode is full of words of wisdom, incredible perspective and heartfelt vulnerability. Share it with your favorite extra lucky dad, we can’t wait to hear what you all think! The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions. On July 7th, 2007, Brady Murray’s life changed forever. Shortly after he and his wife, Andrea, welcomed their newborn son into this world, the doctor informed Brady that his son has Down syndrome. Shock and fear overcame him as he tried to grasp what this meant to his young family. Fast forward to today and Brady wouldn’t trade this life as a father raising a son with Down syndrome for anything. In fact, The Murray’s have loved this special journey so much so, that they adopted their son Cooper, in 2016 from Tianjin, China. Cooper also has Down syndrome. Brady’s mission in life is to give a voice and path to everyone within the disability community and empower each individual to sing the song they are meant to sing. As part of this special journey, Brady and Andrea founded RODS Heroes, a non-profit dedicated to inspiring families to answer the call to adopt a child with Down syndrome or other unique circumstances. Since its inception, RODS Heroes has inspired thousands of families to consider opening their hearts to the miracle of adoption.  Brady and Andrea Murray are the proud parents of eleven children. Seven of their children joined their family through adoption. You can find Brady and Rods Heroes @extraluckydad and @rodsheroes, www.rods.org and www.coopermurray.org. Danny Jordan is an award-winning author and TV producer. When his daughter was born with an upper limb difference in 2018, he became an advocate for inclusion and accurate representation of disability in the media.  Danny's premiere book, Rae's First Day: The First Story in The Capables Series, received the Kirkus Star, the IBPA Benjamin Franklin Award, and was named one of the Best Books of 2021 by Kirkus Reviews magazine. He has since gone on to publish the second book in The Capables series, Lex Leads The Way. This journey has inspired the founding of The Capable Foundation, a nonprofit dedicated to celebrating difference and promoting inclusion.  Outside of his literary adventures, Danny has produced and directed over 200 hours of primetime major network and cable television programming, along with co-hosting the #1 Christmas podcast in the world, Christmas Countdown. Danny was most recently on the production team for How To Dance In Ohio, a broadway show about and starring individuals with autism.  Danny lives in California with his family. Follow Danny on Instagram @dannyjordan and @thecapables, where you can find links to all his work.

On this episode, we’re talking potty training! This can be a tough topic on our community because many of our journeys with it are longer with different versions of success. We brought in our favorite expert to dive in to some of it. We hope you find some helpful tips or just find some solidarity in this conversation.  Owner and founder of Potty Training Consultant, Allison Jandu, is a parent just like you. When it came time to potty train her oldest, she was quickly overwhelmed by all the conflicting information available online and was missing the support and guidance she was after. She didn't think it seemed fair for parents to have to guess their way through potty training - toddlerhood is challenging enough! So, after almost 2 years of research (which is ongoing all the time), she created Potty Training Consultant where she has helped thousands of families potty train. She does not just provide a place to get that one-on-one expert support, but a community where moms can come together without judgment, ask the hard questions, and get evidence-based facts that drive potty success. You can find Allison on social media @pottytrainingconsultant or on her website here.

Taryn sits down with ELM Director of Communications, Sarah Raphael, and ELM community member and Marriage & Family Therapist, Erica Realpe, to talk burnout. All three ladies share their personal experiences with burnout, what changes they made to mitigate it and what having a child with a disability meant to that journey. Erica shares her perspective as both a therapist and someone who is not immune to mental health struggles. Sarah and Taryn share what major life changes they learned they needed to make through debilitating anxiety and depression. We know you will learn so much from this honest discussion among three Extra Lucky mamas. All three women are contributors in the book Dear Mama: Stories of an Extra Lucky Life. You can learn more about the book on Instagram @dearmamathebook, on the ELM website or on Amazon. You can find them individually on Instagram at: @tarynlagonigro @sarshieraph @ellrealpe

Taryn sits down with the Foregenomics team on this episode of The Extra Lucky Podcast. We learned about this company from Jess Fabre, ELM community member and Dear Mama contributor. You likely heard Jess talk about them in Episode 10! Foregenomics has designed the most comprehensive genetic test for newborns, infants and children. As we've seen so many members of our community spend countless time, money and, most importantly, stress, getting to a diagnosis for their children, we knew we had to talk to them ourselves. You'll hear their mission of giving parents peace of mind and the knowledge to help their children live healthier lives. You'll also hear what sets them apart in our minds, what they provide for families beyond the diagnosis and what this organization means to our rare community.  Learn more about Foregenomics at www.foresite360.com or on Instagram @foregenomics. Use code ELMFORE10! for a discount off testing on their website.

Jess and Taryn sit down with Brittany & Sue Schiavone in this special post-Mother's Day episode of the Extra Lucky Podcast. Brittany is the brains behind Brittany's Baskets of Hope, a non-profit dedicated to showering families with joy after welcoming a child with Down syndrome. Brittany is an adult with Down syndrome who likes to say "People with Down syndrome can do anything. Really, really anything." Her mom Sue is a proud advocate and we just love the bond these two amazing women have. You can also hear a special announcement during this episode as well as witness the friendship all of us have formed thanks to an extra chromosome. You can learn more about Brittany's Baskets of Hope on Instagram @brittanysbaskets or at their website www.brittanysbasketsofhope.org. You can support their organization by donating at their website or choosing an item from their wish list (all details on their website). This episode was produced by Andie Amit of Sprouting Productions.

As we approach Mother's Day, we couldn't think of a better episode to bring you. Longtime ELM community member and Dear Mama contributor Jessica Fabre's advocacy for her daughter started with that mother's intuition that something wasn't right with her and that she wasn't getting the right answers. Her sheer will led to the right diagnosis and completely changed her life. She now advocates for others is an incredible support for parents on any disability journey. We can't wait for you to get to know Jessica more during this interview with Jess and Taryn. Jessica is the mother of a 10 year old little girl named Sophie, who has Limb Girdle Muscular Dystrophy 2A/Rl; a rare progressive muscle wasting disease. Jessica's daughter endured 2 years of being misdiagnosed with Necrotizing Myositis, painful procedures and unnecessary treatments when a simple genetic cheek swab test could have revealed immediate answers. Her mission is to help spread awareness about rare disorders, prevent misdiagnosis and initiate early detection of possible disease. Jessica resides in Sarasota, FL with her two children, formerly from Northern NJ. Jessica’s professional background involved working extensively with C-Suite CEOs, corporate marketing and assisting with acquisitions for a publicly traded company. Little did she know her research abilities, attention to detail, and unrelenting determination to complete projects in business would prepare her for a career she never imagined she’d have. Being an advocate gives a sense of purpose to the unforeseen turn her life took. Learn more about Jessica here: www.navigatingrare.com Email: jessica@navigatingrare.com Instagram: jessica.fabre.359 Facebook: is Heros for Muscular Dystrophy Calpainopathy LGMD2a/r1 and Jessica Fabre on FB Today's episode was produced by Sprouting Productions and is sponsored by Foregenomics. Learn more about each through the links.

To kick off May being Mental Health Awareness Month, Taryn is joined by April Aguilera as they discuss the pressure to advocate (and publicly) in the disability community. Both women share their perspectives on their respective children's diagnosis and when they felt comfortable stepping into advocacy, their why and what all that looked like for them. April Aguilera is a filmmaker currently living in Savannah Georgia with her husband and three daughters. Her second daughter, Paloma, was born with the unexpected birth diagnosis of Down syndrome. April processed her daughter's diagnosis through creating. April opened her one woman dramatic musical, A Sea Full of Stars, in New York in 2019 and was invited to perform at the Edinburgh Festival Fringe when the world came to a screeching halt. April was then accepted into The Savannah College of Art and Design to pursue a graduate degree in screenwriting. While in graduate school she shot her multi Student Emmy award-winning drama film, For Paloma. April is currently writing the Biopic of the artist Judith Scott, whose work can be seen at the MOMA and the Guggenheim along with Judith’s twin sister, and Author of the book Entwined, Joyce Scott. April has worked in film and television for companies such as SONY and Apple Tv and has coordinated for Showtime and Array. You can find April on instagram @aprilm.aguilera and learn more about For Paloma @forpalomathemovie. All of April's work is at www.moonroseproductions.com. Episode produced by Sprouting Productions.

By request! Taryn shares her tips for starting a gratitude practice. Taryn's book, Ups, Downs and Silver Linings is a journey through finding gratitude through several experiences in her life. You can find that book on Amazon: https://amzn.to/3UkX8z7