24: Episode 24 - Embracing Life with a Disability
49m
·
MDA Quest Podcast
·
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
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/
- Facebook: https://www.facebook.com/HereditaryNeuropathyFoundation
- Website: https://www.hnf-cure.org/
Connect with Mindy:
- LinkedIn: https://www.linkedin.com/in/hendersonmindy/
- Instagram: https://www.instagram.com/mindyhendersonspeaks/
The episode 24: Episode 24 - Embracing Life with a Disability from the podcast MDA Quest Podcast has a duration of
49:50. It was first published
More episodes from MDA Quest Podcast
41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
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
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/
40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
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/
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/
39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
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
Connect with Dr. Hesterlee:
- https://www.linkedin.com/in/sharon-hesterlee/
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/
38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
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/
37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
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