Hilde Mosse comes from one of the wealthiest families in Berlin and stands to inherit an enormous fortune. But she longs for something more meaningful than the luxurious lifestyle her family provides. So Hilde decides to pursue her dream of becoming a doctor. As the Nazis take power in Germany and the Mosse family is forced to flee, Dr. Hilde Mosse lands in New York having nearly lost everything.. She finds her calling treating the mental health of Black youth – and the symptoms of a racist system. In addition to photographs, school records, and correspondence spanning Hilde Mosse’s entire lifetime, the Mosse Family Collection in the LBI Archives includes the diaries she kept between 1928 and 1934, from the ages of 16-22. Hilde’s papers are just part of the extensive holdings related to the Mosse Family at LBI. Learn more at lbi.org/hilde . Exile is a production of the Leo Baeck Institute, New York and Antica Productions. It’s narrated by Mandy Patinkin. This episode was written by Lauren Armstrong-Carter. Our executive producers are Laura Regehr, Rami Tzabar, Stuart Coxe, and Bernie Blum. Our producer is Emily Morantz. Research and translation by Isabella Kempf. Voice acting by Hannah Gelman. Sound design and audio mix by Philip Wilson. Theme music by Oliver Wickham. Please consider supporting the work of the Leo Baeck Institute with a tax-deductible contribution by visiting lbi.org/exile2025 . The entire team at Antica Productions and Leo Baeck Institute is deeply saddened by the passing of our Executive Producer, Bernie Blum. We would not have been able to tell these stories without Bernie's generous support. Bernie was also President Emeritus of LBI and Exile would not exist without his energetic and visionary leadership. We extend our condolences to his entire family. May his memory be a blessing. This episode of Exile is made possible in part by a grant from the Conference on Jewish Material Claims Against Germany, which is supported by the German Federal Ministry of Finance and the Foundation Remembrance, Responsibility and Future.…
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เนื้อหาจัดทำโดย MDA Quest Podcast and Muscular Dystrophy Association เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก MDA Quest Podcast and Muscular Dystrophy Association หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal
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49: Episode 48 - Living with intention and creating a more beautiful life with Amber Bosselman
Manage episode 463966689 series 2954269
เนื้อหาจัดทำโดย MDA Quest Podcast and Muscular Dystrophy Association เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก MDA Quest Podcast and Muscular Dystrophy Association หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams.
Guests:
Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence.
When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others.
Connect with Amber:
Guests:
Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence.
When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others.
Connect with Amber:
- Facebook: https://www.facebook.com/p/Amber-Bosselman-Coaching-100076004193828/
- Instagram: https://www.instagram.com/amber.bosselman.coaching/
Host:
Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck.
Connect with Mindy:
Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck.
Connect with Mindy:
50 ตอน
Manage episode 463966689 series 2954269
เนื้อหาจัดทำโดย MDA Quest Podcast and Muscular Dystrophy Association เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก MDA Quest Podcast and Muscular Dystrophy Association หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams.
Guests:
Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence.
When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others.
Connect with Amber:
Guests:
Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence.
When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others.
Connect with Amber:
- Facebook: https://www.facebook.com/p/Amber-Bosselman-Coaching-100076004193828/
- Instagram: https://www.instagram.com/amber.bosselman.coaching/
Host:
Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck.
Connect with Mindy:
Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck.
Connect with Mindy:
50 ตอน
ทุกตอน
×In this episode of Quest Podcast, we chat with three of our MDA Ambassadors. Nora is a passionate animal advocate and lives with Selenon (SEPN1)-related myopathy (RM). Justin is a disability advocate and an Operations Manager and lives with Limb-girdle Muscular Dystrophy and K.L. is an entrepreneur, poker professional, and influencer living with Spinal Muscular Atrophy. They have each devoted themselves to finding their path in life and advocating and teaching others about their respective neuromuscular disease. While offering unique perspectives on dating and marriage, they join us to share their experiences, expertise and advice when it comes to navigating romance and finding love. Transcript Guests: Nora Ramirez lives in California and was diagnosed with Selenon (SEPN1)-related myopathy (RM) at the age of 9 years old. She is one of four siblings with SEPN1-RM; the other three siblings have passed away, which is one of the reasons why advocacy is such an important topic for her. Nora is a dog mom of two, one of which was a foster, and the other found through a rescue organization. She is also a wife, daughter, and aunt. During her free time, she loves to volunteer for nonprofit organizations, and also help friends, family, and strangers with anything they allow. Helping and creating connections with others is what keeps her grounded, motivated, and provides energy for the days ahead. When she is not volunteering, she enjoys playing video games, drawing, painting, writing, reading, or researching. Connect with Nora: Instagram: thatchickwithmd LinkedIn: https://www.linkedin.com/in/nora-r-946219302 Justin Lopez is a 30-year-old disability advocate and the Operations Manager at CASE FMS. Originally from Farmington Hills, Michigan, he now resides in Toledo, Ohio. Diagnosed with Limb-girdle Muscular Dystrophy (LGMD 2B) at 13, Justin has dedicated much of his life to advocating for disability rights and promoting inclusivity in both personal and professional spaces. As a son, brother, husband, and father, Justin understands the importance of community and support. With over six years of experience in operations management, he leads his team with a focus on efficiency and collaboration. In addition to his professional work, Justin is an active speaker and recently served as the keynote speaker for an IT company’s Global Accessibility Awareness Day (GAAD), where he highlighted the importance of accessibility and flexibility in fostering inclusive work environments. Outside of work, he enjoys sports—especially basketball and football—and values quality time with his family. Connect with Justin: Tik Tok: @justinjaylopez24 Facebook: Justin Jay Lopez X/Twitter: @justinjaylo24 K.L. Cleeton is an entrepreneur, poker professional, and influencer committed to empowering individuals to realize their potential. He focuses on startup development and motivates others to overcome their limitations, achieving more than they imagined. He is currently an advisor to Vendoor, an app that enhances efficiency and streamlines operations in the construction and retail sectors. Connect with K.L.: Website: klcleeton.com Instagram: https://www.instagram.com/realhighhands89/ Bluesky: https://bsky.app/profile/highhands89.bsky.social Twitter/X: https://x.com/highhands89 Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 49: Episode 48 - Living with intention and creating a more beautiful life with Amber Bosselman 39:14
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams. Guests: Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence. When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others. Connect with Amber: Facebook: https://www.facebook.com/p/Amber-Bosselman-Coaching-100076004193828/ Instagram: https://www.instagram.com/amber.bosselman.coaching/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Ira Walker. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able.Ira feels that connecting and sharing his story with others through MDA has been life changing. These Ambassadors join us to share their experiences, expertise, and advice. Transcription Guests: Leah is 17 years old and was born with an ultra-rare form of neuromuscular disease. She is an accomplished actress, dancer, model and adaptive athlete. She has danced on the Lincoln Center stage, walked in New York Fashion Week... twice , and appeared in the Jennifer Lopez movie, Marry Me . Connect with Leah: Instagram - @leahj.zelaya Ira is a 39-year-old who lives with spinal muscular atrophy (SMA). He’s an avid sports fan, cultural connoisseur of the arts, and an impressive cook who is constantly evolving his culinary abilities. A highly independent and active gentlemen that is living his dream and best life in south Florida while working an exciting career in HR and loves exploring the the sights and sounds of his environment in his sophisticated modified van. Connect with Ira: Facebook – https://www.facebook.com/IraWalker321 Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the Kira Cosmetics founder and entrepreneur, who lives with muscular dystrophy. Shakiira Rahaman, who founded her make-up line in 2019 after a life changing event, joins us to share her experiences, expertise, and advice when it comes to navigating life and following your dreams. Transcript Guests: Kira Cosmetics was founded by Shakiira Rahaman , a 37-year-old Fl. woman with Muscular Dystrophy. After an extended hospital stay in 2019, she went home and was inspired by a YouTube entrepreneur video. As a former make-up sales rep, she set out to create her first make-up line! Perfect for make-up lovers who love the art of makeup, Kira Cosmetics is cruelty-free, recyclable, and has packaging that becomes decor. Connect with Shakiira: Website: https://kiracosmetics.com/ Instagram: https://www.instagram.com/p/C2h08KJs8Kx/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 46: Special Edition - National Disability Employment Awareness Month (NDEAM) Panel for Jobseekers and Employers 1:24:36
1:24:36
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In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, public speaker and educator, Keely Cat-Wells. She devotes her time and expertise to creating education and employment opportunities and inclusive spaces for those with disabilities - and delivers advice and inspires action while sharing stories of resilience and positivity. Keely is the founder and CEO of Making Space , a talent acquisition and learning experience platform and a co-founder of Making Space Media , a production company that focuses on increasing representation in TV and film. She joins us to share her experiences, expertise, and advice. Transcript Guests: Keely Cat-Wells is an entrepreneur and Disability Rights Advocate dedicated to driving social, systemic, and economic change. After experiencing a multitude of health issues that resulted in a physical disability, Keely focused her career on advocacy and inclusion in entertainment. She founded a talent representation company that is reshaping the perceptions of disability and has placed thousands of actors with disabilities in on-screen projects. She established Making Space, a talent acquisition and learning experience platform that creates pathways to employment and career advancement for those living with disabilities. Keely partnered with TV host, author, and Disability Rights Advocate, Sophie Morgan, to co-found Making Space Media, which produces film, TV, and promotional content that centers on the disabled voice and recently secured a first-look deal with Reese Witherspoon’s Hello Sunshine company. Keely is a public speaker and staunch advocate for disability rights and mental health awareness. She is a founding member of the #WeThe15 campaign, which is considered the most significant human rights movement in sports history. Keely has presented to national leaders, including President Joe Biden, delivered speeches to the UN and large companies and organizations, and has received numerous awards and honors, including Forbes 30 Under 30 and Great British Entrepreneur of the Year. Connect with Keely: https://keelycatwells.com/ https://making-space.com/ https://www.making-space-media.com/ https://www.instagram.com/keely_cat_wells/ https://www.linkedin.com/in/keelycatwells/ https://x.com/keelycatwells https://www.facebook.com/keely.wells3/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with Shaun Hill, MDA’s Manager of Public Policy & Advocacy and Mark Fisher, MDA’s Director of Advocacy Engagement. They join us to share the most recent voting updates, accessibility information, and expertise and advise about MDA's voting program and advocacy efforts. Please join us and make your vote count at https://mda.org/vote . Guests: Shaun Hill currently serves as Manager, Public Policy & Advocacy for the Muscular Dystrophy Association. Ms. Hill is a veteran government relations professional, who has worked continuously in the healthcare arena, championing causes on behalf of both patients and providers, working through legislative, regulatory, and advocacy channels to impact change. In many of these roles she has led the charge on advocacy campaigns, such as MDA’s current initiative Access the Vote. A native of Washington, DC, she is a graduate of Howard University and has studied political management at George Washington University. Mark Fisher is the Director of Advocacy Engagement at the Muscular Dystrophy Association. In this role, Mark leads MDA’s grassroots program and advocacy volunteer efforts. He works to empower advocates and connect them with key decisionmakers in order to advance public policies that improve the lives of the neuromuscular disease community. He previously served as the Digital Grassroots Manager at the American Heart Association and was also a field organizer on a U.S. Senate campaign. Mark earned his Master of Public Policy from American University and is originally from Pittsburgh, PA. For Information About Voting - https://mda.org/vote For Local information about Voting- https://www.vote.org/ Join the Grassroots Advocacy Team - https://www.votervoice.net/MDA/register Connect with MDA Advocacy: advocacy@mdausa.org Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things : Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is inclusive of everyone. Keep up on the latest information about the movie release at www.goodbadthings.com . Transcript Guests: A Southern California native, Shane Stanger is a filmmaker and entrepreneur whose career began in 2009 in the ICM mailroom before spending two years as an assistant to an agent in the motion picture department. Shane went on to associate produce BERNIE, directed by Richard Linklater, starring Jack Black and Matthew McConaughey. The success of BERNIE paved the way for Shane's role as the lead producer for the independent feature Pretty Perfect . In May 2013, Shane founded and launched The Baked Bear, a dessert concept out of San Diego specializing in ice cream sandwiches. In 2016 Shane was a recipient of the Forbes 30 Under 30 Award. By 2021, Shane had opened over 35 Baked Bear locations across 12 states and decided to return to his true passion: filmmaking. Shane enrolled in the prestigious Peter Stark Producing Program at USC’s School of Cinematic Arts and received his MFA in May 2023. Good Bad Things is Stanger’s writing and directing debut and during the world premiere at Slamdance Film Festival (2024) won the audience and grand jury awards. Connect with Shane: Instagram: @shanestanger Instagram: @goodbadthingsfilm Steve Way is a 33-year-old actor, comedian, writer, and speaker. He was born with Muscular Dystrophy and is an activist for disability rights and universal healthcare. Steve can be seen in the Hulu show RAMY and is the executive producer of the award-winning film Good Bad Things . Connect with Steve: Instagram: @thesteveway www.thesteveway.com https://thesteveway.substack.com/ Danny Kurtzman is a physically disabled model, actor, entrepreneur, and advocate for the disabled community. Diagnosed with a muscular dystrophy at a young age, Danny never let his disability stop him from doing anything he put his mind to. After graduating from LMU, he joined the family business becoming the 4th generation in the fashion industry. His passion and love for fashion drove him to creative direct, design, market, and grow multiple brands. Today Danny's passion not only lies in fashion, but in making this world a more accessible place for all disabled individuals. Danny uses his platform to spread his disability pride and tell the world that despite being physically disabled that he says “there’s nothing wrong with my body. It is perfect.” Connect with Danny: Instagram: @dannykurtzman Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive design. She stresses style empowers people, bringing them joy, identity, and self-expression, and inclusion is at the heart of her work. She joins us to share her experiences, expertise, and advice. Transcript Guests: Yasmin Keats is the Executive Director at Open Style Lab (OSL), A national design award-winning nonprofit organization initiated at MIT in 2014. OSL is dedicated to making style accessible to people of all abilities. Yasmin comes to this field with her experience of living with a physical disability. She has a background in graphic design, architecture, and creative learning. Connect with https://www.openstylelab.org/ https://www.instagram.com/openstylelab https://www.facebook.com/openstylelab/ https://www.linkedin.com/company/open-style-lab/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks…
In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease, He and his wife join us to share their experiences, advice and stories of resilience and positivity. To view a full list of clinical trials, you may be eligible for, go to https://www.mda.org/research/clinical-trials Transcript Guests: Ken Sutcliffe is a retired US Army veteran and a Dallas, Texas firefighter. He joined the military at age 17 and the Dallas Fire Department in 1987. He met his wife, Andi, of 13 years while helping her move and eventually they worked together on the Texas Task Force One statewide urban search and rescue team. He retired in June 2020 after 33 years of service. He began to show symptoms of ALS during the summer of 2020 and was diagnosed in November 2021. Connect with Ken and Andi: https://www.facebook.com/dallas.firefightersassoc Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making Space Media , a production company that focuses on increasing representation in TV and film, and a leader in the global disability rights campaign “ Rights on Flights ”. She joins us to share her experiences, expertise, and advice. Transcript Guests: Sophie Morgan is a 38-year-old BAFTA nominated TV presenter, producer, writer, disability rights advocate, and artist. Paralyzed in an automobile accident when she was 18 years old, Sophie became one of the first female wheelchair users globally to host on television and is transforming the representation of disability on screen. Sophie can be seen anchoring live sports, including the Paralympics, fronting in her own prime-time travel series and hard-hitting current affairs documentaries, and as a regular panelist for ITV’s Loose Women. She recently co-founded Making Space Media with Keely Cat Wells. Making Space Media, a production company that focuses on increasing representation in TV and film, recently contracted with Reese Witherspoon’s media company Hello Sunshine. Named one of the top 10 influential disabled people in the UK, her advocacy work includes serving on the advisory boards for Human Rights Watch, speaking at the United Nations, spearheading the global disability rights campaign “Rights on Flights”, serving as a Can-Am global ambassador, writing a monthly column for Conde Nast Traveler, and much more. Connect with Sophie: https://making-space.com/ https://rightsonflights.com/ https://www.instagram.com/sophlmorg/ https://www.sophiemorgan.com/ https://twitter.com/sophiemorgan96 https://www.facebook.com/SophMorg/ https://www.linkedin.com/in/sophie-morgan-b05a0671/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee. Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases. Their goal is to create successful treatments and eventually a cure for those effect by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice. Transcript Guests: Dr. Jeffrey Chamberlain is a geneticist with expertise in the muscular dystrophies, and is currently a professor of neurology, medicine and biochemistry at the University of Washington School of Medicine, director of the Wellstone Muscular Dystrophy Specialized Research Center, and the McCaw Endowed Chair in Muscular Dystrophy. He is also current president of the American Society for Gene and Cell Therapy. Research in the Chamberlain lab focuses on understanding the molecular basis of, and developing treatments for, the muscular dystrophies with a focus on gene therapy. His group invented ‘micro-dystrophin’ and discovered that vectors derived from AAV can be used for bodywide, systemic gene delivery to muscle. Several of his vector designs are being tested in human clinical trials for Duchenne muscular dystrophy. Connect with Dr. Chamberlain: https://sites.uw.edu/chamblab/home/ https://www.seattlemuscle.org Dr. Hesterlee is Chief Research Officer of the Muscular Dystrophy Association. She has over 20 years of experience in neuromuscular research in both the nonprofit and industry space, where she has served variously as head of research, project lead and CEO. She has been involved in numerous efforts to remove barriers to therapy development for rare disease and foster interactions between patient advocacy groups and industry. She received her Ph.D. in neuroscience from the University of Arizona in 1999. Connect with Dr. Hesterlee: https://www.linkedin.com/in/sharon-hesterlee/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the founders of Dateability, a dating app geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections. Their goal is to make love accessible for everyone. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Alexa Child , co-founder of Dateability, graduated from Georgetown Law in 2015 and currently works as a public interest attorney. Through witnessing her sister’s experience with disability, Alexa has become an advocate and ally for the disability community. She is passionate about social justice, enjoys TV and film, and loves all things Halloween. Jacqueline Child , co-founder of Dateability, has turned her experience with disability and chronic illness into a new venture. She created Dateability with her sister after years of discouraging ableist experiences on the mainstream dating apps. When she isn’t managing her health, Jacqueline enjoys playing the guitar, reading, and spending time with her family and dogs. Connect with Dateability: Instagram: https://www.instagram.com/dateabilityapp/ TikTok: https://www.tiktok.com/@dateability Facebook: https://www.facebook.com/dateabilityapp Info Page: https://info.dateabilityapp.com/ iOS: https://apps.apple.com/us/app/dateability/id6443474660 Android: https://play.google.com/store/apps/details?id=com.dateabilityapp&hl=en&gl=US Web App: https://www.dateabilityapp.com/login Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and mindfulness. He joins us to share his experiences, expertise, and advice. Transcript Guests: Isaac Banks has many obstacles that could stop him, but muscular dystrophy isn’t one of them. At age 8, Isaac was misdiagnosed as having Duchenne muscular dystrophy by a family doctor. When he was 21, doctors noticed Isaac’s diagnosis wasn’t progressing as expected. After contacting MDA, he was tested and the results revealed that he was actually living with limb girdle muscular dystrophy. Isaac has since found a successful career in corporate America. He is a talented public speaker and has designed a comprehensive Diversity, Equity, and Inclusion program, as well as a Servant Leadership for Management program. Over the years, Isaac participated in various programs provided by MDA, including Summer Camp and speaks about the profound ways that Summer camp set him up for success in life and molded him into the deeply fulfilled person he is today, spending as much time as he can giving back. Connect with Isaac: Facebook: IsaacDBanks LinkedIn: isaac-d-banks Apple Podcast: Man vs Wheelchair PodBean: Man vs Wheelchair Host: Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: hendersonmindy Instagram: mindyhendersonspeaks…
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Amy lives with a type of muscular dystrophy called Bethlem myopathy. She has had symptoms since birth but did not receive a diagnosis until she was 44 years old - thanks to genetic testing. She is the mom of two boys who are in college and high school. She enjoys painting with acrylics and oils, cooking, baking, reading and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her in her duo bike. They have competed in multiple marathons together. Connect with Amy: Facebook: amy.l.shinneman Instagram: @ashinneman Leah is 16 years old and was born with an ultra-rare form of neuromuscular disease. She is an accomplished actress, dancer, model and adaptive athlete. She has danced on the Lincoln Center stage, walked in New York Fashion Week... twice , and appeared in the Jennifer Lopez movie, Marry Me . Connect with Leah: Instagram: @leahj.zelaya Host: Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org , President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast. Georgia Galanoudis had devoted her career to deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. She joins us to share her experiences, expertise, and advice. Transcript Guest: Throughout her career Georgia Galanoudis has been exploring content’s ability to educate, inspire and build community. As the Director of Marketing and Communications at Idealist.org , Georgia and her team deliver the support and access needed to help individuals reach their full social-impact potential. She uncovers authentic and compelling stories that deliver advice, inspire action, and make us feel closer together. During her career, Georgia has managed marketing solution agencies within large publishers, such as Time Inc. She ran the strategy practice for a full-service digital agency and led new business efforts for best-in-breed content agencies. At the Healthcare Information and Management Systems Society (HIMSS), as Head of Media and then as Chief Experience Officer, Georgia helped ensure the HIMSS member community had access to the tools and connections necessary to realize the mission of reforming the global health ecosystem. As an experienced board director, Georgia currently serves as President for New York Women in Communications (NYWICI). She is the host of the NYWICI WomenHeard Changemakers podcast , where you can hear communications industry leaders share personal stories of resilience and positivity in the face of challenging transition. Connect with Georgia: LinkedIn: https://www.linkedin.com/in/georgiagalanoudis/ https://www.linkedin.com/company/idealist.org/ Facebook: https://www.facebook.com/Idealist X (formerly known as Twitter): https://twitter.com/idealist Instagram: https://www.instagram.com/idealist_org/ TikTok: https://www.tiktok.com/@idealist_org Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with a distinguished business leader from the St. Louis area, who lives with physical disabilities. Lori Becker, CEO of Starkloff Disability Institute, has devoted her career to promoting diversity and inclusion both in the workplace and in the community. She joins us to share her experiences, expertise, and advice in recognition of National Disability Employment Month. If you would like to get involved in advocating for policy issues related to employment for individuals with disabilities, please go to https://www.mda.org/get-involved/advocacy for information about the MDA Grassroots Advocacy Team. Transcript Guest: Lori Becker joined the Starkloff Disability Institute in 2013 as Director of Development and Communications. With her influence, the Institute has grown by leaps and bounds. Lori was named to the 2020 class of Diverse Business Leaders by the St. Louis Business Journal. One of 20 leaders selected from a pool of more than 90 nominees, she was featured in a September issue of the Business Journal where she was recognized for her efforts to promote diversity and inclusion both in the workplace and in the community . The Board of Directors named LoriCEO in 2023. Like many Starkloff employees, Lori has a disability.She is legally blind due to a genetic disorder called Stargardt’s Disease. Connect with Lori: https://www.facebook.com/StarkloffDisabilityInstitute/?ref=aymt_homepage_panel https://twitter.com/SDI_Disability https://www.instagram.com/starkloffdisability/ https://starkloff.org/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion 1:01:10
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In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and advice when it comes to navigating life. Transcript Guests: Madison Lawson is a journalist, model and disability rights activist. Her written works have been featured in publications including Vogue, Glamour, Teen Vogue, Allure and more. Lawson’s advocacy work has gotten her featured in campaigns with brands like Sephora, PrettyLittle Thing, and Olay. Her greatest inspiration is the work and legacy of her late friend and the mother of the disability rights movement Judy Heumann who laid the groundwork for disabled people around the world to be better integrated into society. Heumann’s work included organizing and carrying out the longest non-violent occupation of a federal building to get legislation like 504 and the Americans with Disabilities Act passed, igniting the disability pride movement that has empowered generations of disabled people around the world. Lawson hopes to give representation to her younger self who never saw people who looked like her shown in a positive light in media, and to be one of the many voices pushing the needle of inclusion forward for people with disabilities. Instagram: https://www.instagram.com/wheelchairbarbie/ TikTok: https://www.tiktok.com/@wheelchairbarbie LinkedIn: https://www.linkedin.com/in/madison-lawson-978a63112/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 32: Episode 32 - Accessible Air Travel and Advocacy Updates 1:03:28
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In this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise and advise about MDA's grassroots program and advocacy volunteer efforts. Please join us and make your voices heard about making air travel accessible at mda.org/airtravel . Transcript Guests: Mark Fisher is the Director of Advocacy Engagement at the Muscular Dystrophy Association. In this role, Mark leads MDA’s grassroots program and advocacy volunteer efforts. He works to empower advocates and connect them with key decisionmakers in order to advance public policies that improve the lives of the neuromuscular disease community. He previously served as the Digital Grassroots Manager at the American Heart Association and was also a field organizer on a U.S. Senate campaign. Mark earned his Master of Public Policy from American University and is originally from Pittsburgh, PA. For Information About our Advocacy Efforts - https://www.mda.org/get-involved/advocacy Join the Grassroots Advocacy Team - https://www.votervoice.net/MDA/register Michael Lewis has spent over a decade working in disability rights for various organizations. His passion for disability policy advocacy stems from his experience as an individual with cerebral palsy. As Director, Disability Policy at MDA, Michael leads MDA’s advocacy efforts on Capitol Hill and with federal agencies to defend and expand access to civil rights, education, economic independence and employment, and accessible recreation and travel for people with neuromuscular diseases and other disabilities. A graduate of UNC-Chapel Hill and Regent University, Michael resides in northern Virginia with his wife and four children. Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible. Transcript Guests: Brooke is a social media influencer who was recently featured on the Today Show. She was diagnosed with ALS in March 2022 after four years of confusing symptoms in her leg. She hopes to spread awareness of ALS to as many people as possible and laugh along the way. Tiktok: @LimpBroozkit Instagram: @LimpBroozkit Twitter: @LimpBroozkit Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood. Transcript Guests: Steve is a 32-year-old actor, comedian, writer, and speaker. He was born with Ullrich Congenital Muscular Dystrophy and is an advocate for disability awareness. Steve performs stand-up comedy and motivational speeches around the country and can be seen on the Hulu show Ramy. Instagram - https://www.instagram.com/thesteveway/ Website - https://www.thesteveway.com/ Substack - https://thesteveway.substack.com/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory) 54:09
Summer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe accessible travel blog, and Cory Lee, creator of the Curb Free with Cory Lee travel blog, join us to share their experiences, expertise, and advice when it comes to accessible travel. Transcript Guests: Sylvia Longmire is an award-winning accessible travel writer and photographer, a service-disabled Air Force veteran, and the former Ms. Wheelchair USA 2016. She travels around the world, usually solo, in her power wheelchair to document the accessibility of her destinations through articles, photography, and video. Sylvia is also a director, producer, voice actor, and a staunch advocate for accessibility and disability representation. She is the author of four accessible travel books and the creator of the Spin the Globe accessible travel blog. After being diagnosed with spinal muscular atrophy at the age of two, Cory Lee’s thirst for adventure never ceased. He has traveled across all seven continents in his powered wheelchair while managing to run his travel blog CurbFreeWithCoryLee.com , where he shares his accessible — and sometimes not so accessible — travel adventures with others. He is a four-time Webby Award winner, has won two Lowell Thomas Awards for Best Travel Blog, and he has written for publications such as Condé Nast Traveler, National Geographic, and Lonely Planet. As always, his goal is to inspire other wheelchair users to roll out of their comfort zones and see all of the beauty our world has to offer. Connect with Sylvia: Facebook - https://www.facebook.com/spintheglobeonwheels Instagram - https://instagram.com/sylvia_longmire Blog - https://www.spintheglobe.net sylvia@spintheglobe.net Connect with Cory: Blog - https://curbfreewithcorylee.com Instagram - https://instagram.com/curbfreecorylee Facebook - https://facebook.com/CurbFree Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. Author of the children's books, "No Such Thing as Normal" and "Lovely as Can Be", Megan teaches children the ways in which everyone is unique and that our differences are what make us special. She joins the Quest Podcast to talk about the importance of inclusion and to share her goal of spreading her life mission of living without limits through her books, public speaking, and writing. Transcript Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. At the age of two, she was diagnosed with SMA and has used a wheelchair ever since. Megan is determined to experience life to the fullest and choose joy over despair. She is passionate about motivating others to approach life with an ‘I can do this' attitude. Her ability to share her story and encourage others to look at life through a new lens is only one of her tremendous gifts. Megan has been placed in unique situations and has had to overcome innumerable challenges. She didn't think too much about her differences until she became the mother of a child with special needs. Megan then found herself frequently having to answer questions about her child's own differences. This spawned a passion in Megan for teaching children the ways in which everyone is unique and emphasizing the ways in which that singularity makes them special. In 2020, she self-published her first children's book, "No Such Thing as Normal". It's written to underscore the importance of inclusion and acceptance. Accompanying her book is a self-published coloring book, and her follow up, "Lovely as Can Be", which she has expanded into four volumes. Megan hopes to spread her life mission of living without limits through her books, public speaking and writing to those in the disability community and beyond! Connect with Megan: Instagram: @megandejarnett Instagram: @nosuchthing.co Website: https://megandejarnett.co/ Website: https://nosuchthing.co/ Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert, to discuss what these changes mean to our community as he shares his advice, insights, and expertise on the changing landscape of neuromuscular care. Transcript Guests: Dr. Matthew Harms is a neuromuscular neurologist and neurogenetics expert focused on ALS and related motor neuron diseases. Dr. Harms' lab applies cutting-edge genetic sequencing technologies to discover new genes, define the frequency and range of genetic mutations in ALS, and characterize links between specific mutations and specific types or manifestations of ALS. He is the Director of Precision Medicine Initiatives at Columbia University, Director of the Neurogenetics Program in the Department of Neurology, and Associate Director of the Eleanor and Lou Gehrig ALS Center. Dr. Harms also serves as a Medical Advisor to the MDA. Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
For our February Valentine's Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his feature-length-film "Catching Up". His movie is available to stream on for free on Tubi and Amazon Prime. You can watch the official trailer here: https://www.youtube.com/watch?v=0QrNnmlVqaI . (Note: "Catching Up" is for mature audiences and contains language and some sexual content.) Transcript Guests: Bill Crossland is a writer, director, producer, and actor. A lover of movies since childhood, Bill earned his degree in Film & Media Arts from Temple University in Philadelphia. His work has screened at the Sundance, Heartland, New Orleans, and Atlanta film festivals, and he was named one of Scriptapalooza's Top 100 screenwriters of 2022. Bill's feature directorial debut Catching Up -- an ‘80s style romantic comedy about a man with muscular dystrophy who falls in love with an able-bodied woman -- was picked up by Freestyle Digital Media for worldwide distribution and is now available on DVD and streaming from Amazon Prime, iTunes, and more. You can check out the film's website here: catchingupmovie.com Connect with Bill: Twitter: @Just_Plain_Bill Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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1 25: Episode 25 - New Year, New Mindset 1:05:27
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We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, "mindset disruptor," and #1 best-selling author of “Don't Let Your Struggle Become Your Standard." Jose speaks all over the world, sharing his experience of growing up with a physical "disability" and how you can use the power of your mind to overcome anything that life throws your way. Transcript Guests: Jose Flores is a corporate speaker, Global Motivator, Mindset Disruptor, and #1 best-selling author. Jose speaks all over the world using his unique story of growing up with a physical "disability" and how you can use the power of your mind to overcome anything life throws your way. His main message is to never allow your struggle to become your standard and how to dominate your life and business. Jose lives with spinal muscular atrophy. Find Jose's book Don't Let Your Struggle Become Your Standard on Amazon Connect with Jose: Facebook: https://www.facebook.com/JoseInspires Instagram: https://www.instagram.com/joseinspires/ LinkedIn: https://www.linkedin.com/in/josefloresinspires/ Twitter: https://twitter.com/joseinspires TikTok: https://www.tiktok.com/@joseinspires YouTube: https://www.youtube.com/joseinspires Website: https://www.joseinspires.com/ Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
On this episode of Quest podcast, we join forces with hosts of the popular podcast "Embrace It," Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community. Estela and Lainie bring their incredible chemistry and personality to our discussion on living with a disability, parenting, business, fashion, their podcast and workshops, and their over-arching goal to rebrand disability and empower others. Check out Lainie and Estela's Podcast and Workshops: Embrace It on Instagram , LinkedIn , or the Embrace It website . Transcript Guests: Lainie Ishbia is a Tedx speaker, writer, entrepreneur, and disability advocate born with a rare and progressive neuromuscular disorder called Charcot-Marie-Tooth Disease (CMT). Although Lainie wears leg braces to help her walk and cannot button up a shirt to save her life, she refuses to let her disabilities stop her and has made it her life's mission to empower others with disabilities to do the same. After receiving a master of social work degree from the University of Michigan, Lainie spent most of her 30+ year career specializing in adolescent girls and women's self-esteem and body image issues. As a self-proclaimed fashionista and disability hack expert, Lainie founded the lifestyle and fashion brand Trend-Able in 2017 where she has helped thousands of other people living with disabilities to embrace their challenges, focus on their strengths, and discover adaptive fashion and other tools for looking and feeling their best. Lainie is the co-creator of the Embrace It Podcast and the EmBrace It Workshop Series. She has partnered with numerous nonprofits, businesses, and Fortune 500 companies to train employees on disability related communication and to eradicate micro-aggressions and negative stereotypes of people with disabilities in the workplace. Connect with Lainie: LinkedIn: https://www.linkedin.com/in/lainie-ishbia-b5a89a16/ Instagram: https://www.instagram.com/trend.able/ Facebook: https://www.facebook.com/LainieIsh Estela Lugo was diagnosed with Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later. In 2002, she graduated from FIT with a Bachelor's in Interior Design. Today, her professional background in design, marketing, trend-forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies. As moderator for the CMT-Connect webinar series , Estela enjoys sharing resources and expert information with the CMT community on a wide range of valuable topics. On the EmBrace It Podcast , she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusions workshops that focus on improving advocacy & DEI through communication tools, starting with "How to Communicate with Anyone About Disability ." They've worked with many top brands such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more. In 2019, Estela gave her first TEDx talk titled "RePurpose Your Pain" on the art of turning adversity into life's most beautiful work. She currently co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. She is represented by Gamut Management, an all-inclusive talent agency. Connect with Estela: LinkedIn: https://www.linkedin.com/in/estelalugo/ Connect with the Herediary Neuropathy Foundation: Facebook: https://www.facebook.com/HereditaryNeuropathyFoundation Website: https://www.hnf-cure.org/ Mindy Henderson is the Director of Quest Media, Editor-in-Chief of MDA's Quest magazine and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
Barriers in travel and the lack of accessible transportation are huge issues for many people living with nueromuscular disease and other physical disabilities. Today, we chat with Kelly Buckland, a disability policy advisor at the U.S. Department of Transportation (DOT), and Michael Lewis, the director of disability policy at MDA. Both guests play active roles in advocating for the rights of people with disabilities and for meaningful advances in accessible air travel and transportation policies. In this podcast, we discuss current barriers, advocacy goals, policy updates, and recent successes. Successes that include the US airline industry trade organization, Airlines for America (A4A), and seven US passenger airlines’ adoption of the DOT’s Airline Passengers with Disabilities Bill of Rights and recent commitment to making meaningul improvements to passenger accessibility. Learn more about advances in acessible air travel policy: https://www.airlines.org/news/u-s-airlines-strengthen-commitment-to-passenger-accessibility/ Learn how you can get involved with MDA’s advocacy initiatives: https://www.mda.org/get-involved/advocacy Transcript Guests: Kelly Buckland is a person with a disability who has been actively involved in disability issues since 1979. Kelly graduated from Boise State University with a bachelor’s degree in social work and Drake University with a master’s degree in rehabilitation counseling. He served for over twenty years as the Executive Director of the Living Independence Network Corporation and the Idaho State Independent Living Council in Boise, Idaho. Kelly has been honored with numerous state and national awards, including the University of Idaho President’s Medallion, the Hewlett-Packard Distinguished Achievement in Human Rights Award, Outstanding Alumni of Boise State University, and Outstanding Alumni of Drake University. Kelly also has a long history with the National Council on Independent Living (NCIL). He served as NCIL Vice-President from 2001 to 2005, NCIL President from 2005 to 2009, and NCIL Executive Director from 2009 to 2021. Currently, he serves as a disability policy advisor for the Office of Assistance Secretary on Policy at the US Department of Transportation (DOT). Connect with DOT: LinkedIn: https://www.linkedin.com/company/usdot/ Facebook: https://www.facebook.com/USDOT Twitter: https://twitter.com/USDOT https://www.transportation.gov/ Michael Lewis has spent over a decade working in disability rights for various organizations. His passion for disability policy advocacy stems from his experience as an individual with cerebral palsy. As Director of Disability Policy at MDA, Michael leads MDA’s advocacy efforts on Capitol Hill and with federal agencies to defend and expand access to civil rights, education, economic independence and employment, and accessible recreation and travel for people with neuromuscular diseases and other disabilities. A graduate of UNC-Chapel Hill and Regent University, Michael resides in northern Virginia with his wife and four children. Connect with Michael: LinkedIn: https://www.linkedin.com/in/michael-lewis-575a029/ Twitter: @MichaelKLewis , @MDA_Advocacy https://www.mda.org/advocacy Mindy Henderson is the Editor-in-Chief of MDA’s Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
Inclusively is a technology centered inclusions solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses. Inclusively’s vision is to create a front door to employment that is open to all people, unlocking the world’s hidden talents in the disability community. In this episode, Sarah Bernard, the co-founder and chief operating officer at Inclusively, shares her expertise on the importance of inclusion and accessibility in the workplace – and how employers can get on board to create a more inclusive culture. Transcript Guests: Sarah Bernard is the Co-Founder and Chief Operating Officer at Inclusively, the technology-centered inclusion solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses. Before launching Inclusively, Sarah started her career in enterprise marketing with Forrester Research in London working with industry leaders in technology and business strategy. During her tenure at Forrester, Sarah became a top producing sales executive selling into senior leadership at Fortune 500 companies, helping them drive growth and stay ahead of customer and market dynamics. Sarah’s business development experience carried over into Inclusively as she helped build the company’s go-to-market strategy and secure the earliest enterprise clients. Under her leadership, Inclusively is helping companies elevate workplace accommodations from a compliance-reporting function to a competitive advantage and create a more equitable, productive workplace for all. Sarah graduated from the University of Dayton and is based in St. Louis, MO with her husband and four children. Connect with Sarah: Linked In: https://www.linkedin.com/in/sarahlawlor/ E-mail: sarah@inclusively.com Mindy Henderson is the Director of Quest Media, Editor-in-Chief of MDA’s Quest magazine and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
MDA Let's Play is a welcoming online gathering place for teens and adults where they play together, forge new friendships, share similar challenges, learn new skills, and sometimes get to hang out with celebrities, sports athletes, and professional creators. More than two million viewers have watched MDA Let's Play online events on Twitch. I chat with Larry Leiberman, the founder of MDA Let’s Play, Kenny Small (AKA Beaniez), the program manager and host of MDA Let’s Play, and Charlie Mabry, a streamer and content creator living with Duchenne muscular dystrophy who has connected with MDA Let’s Play to host games and fundraising events. MDA Let’s Play Information: https://www.mda.org/lets-play Twitch: twitch.tv/mda_letsplay Transcript Guests: Larry Lieberman is the founder of MDA Let's Play, a vibrant community of supportive gamers and creators. Larry is a longtime entertainment industry veteran, having produced several top albums and television shows as well as hundreds of concerts, festivals, and gaming events. In addition to MDA, his philanthropy focuses on education and the mental health and emotional wellbeing of young adults. He is the former chief operating officer of Charity Navigator. Connect with Larry: https://www.linkedin.com/in/larrylieberman/ https://twitter.com/liebermanlarry Kenny Small , more commonly known as Beaniez, is the Program Manager and Host for MDA Let’s Play. Beaniez began his career in gaming with Collegiate Esports, where he acted as Team Manager for Rutgers University Overwatch while pursuing event hosting/commentary. Nowadays he spends his time streaming on the MDA Let’s Play channel and creating enjoyable memorable experiences for the members of the MDA Let’s Play community. Between hosting streams, events, and community activities, Beaniez works to connect the beneficiaries of MDA & their supporters in a safe and fun virtual environment. Outside of work you can catch him playing his favorite games and trying to keep his cat Lenny under control! Connect with Beaniez: https://www.linkedin.com/in/kennysmall/ https://twitter.com/Beaniez_ Charlie Mabry lives with Duchenne muscular dystrophy and has been part of The MDA Ambassador Program since 2017. He has participated in multiple MDA community and fundraising events where he lives in Georgia. In 2020, Charlie became a streamer and content creator and started a Tik Tok account called Keepcharliemoving. His platform focuses on sharing his life story living with Duchenne Muscular Dystrophy. An avid gamer, he also streams video games on Twitch. Charlie connected with the MDA Let's Play community, a community he says its one of the best things that he has ever been a part of. Since joining MDA Let’s Play, Charlie has been involved in a variety of fundraising events, including MDA Takes Vegas and MDA Rivals. You can catch Charlie hosting Rocket league games every other Sunday at 2pm EST on the MDA Let's Play Twitch Channel. You can also find him on all social platforms as KeepCharlieMoving and on Twitch at https://www.twitch.tv/charlieharley_1 ! Connect with Charlie: https://linktr.ee/keepcharliemoving Mindy Henderson is the Director of Quest Media, Editor-in-Chief of MDA’s Quest magazine and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and just published her first book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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