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45:56

MDA Quest Podcast

by Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

Copyright: 2021 Muscular Dystrophy Association

Episodes

11: Episode 11: Siblings Tell All

54m · Published 11 Jan 22:39
Having a sibling can be amazing. Siblings can be built-in playmates and best-friends, your partner in crime and a constant in an individual's life. Siblings represent deep-roots and home for the entire life journey they embark on together. But sibling relationships are not without complications. In this episode, we are talking to sibling pairs where one of the siblings has a neuromuscular condition and the other does not. We'll explore the dynamics and speak with the siblings as well as a resident expert from the Sibling Support Project about considerations and strategies for navigating this relationship.

Transcript

Guests: 

Ian Yenzer graduated Cum Laude, from Maryville University in 2017 with a degree in psychology. He has completed some Masters level courses towards rehabilitation counseling. Ian worked part time at Exceptional Equestrian‘s (horse riding therapy) as well as the YMCA since graduation.

He enjoys being outside with his dogs - Shrek, a black lab service dog and Ollie, a miniature dachshund. Ian likes riding his four wheeler and side by side and being out in nature. He tries to exercise daily by using stationary bike and likes to stand up in his tram (similar to a stand lift) to get out of the usual sitting position and stretch. He also likes to read and play video games in his free time.

Ian lives with Becker Muscular Dystrophy.

Dr. Abby Yenzer received her doctorate of physical therapy from the University of Evansville in 2017. She has worked in the Washington University Neuromuscular clinic since 2018. Working in the Neuromuscular clinic was her goal from early on in her education. She has been a camp counselor at MDA camp and looks forward to camps return. In the clinic, she works with patients of all ages to determine their current level of function and make recommendations to improve/ease activities of daily life. She also tries to follow up with patients throughout the year to help progress HEPs and review needs. She is involved in clinical research as a clinical evaluator to help the study team determine if there are changes in strength and endurance related to a trial drug or procedure. Her passion is working with patients and subject participants of all backgrounds and diagnoses to offer beneficial activities to help each individual live as independently as possible.

Connect with Abby: [email protected] 

Chris Carroll lives in East Norriton, PA with his wife Joy and their 1-year-old daughter Jordyn. He works as a Sales Mentor for a Home Remodeling Company, and lives with Limb Girdle Muscular Dystrophy Type 2D.

Connect with Chris: https://www.instagram.com/cjc234/ 

Dan Carroll is 43 yrs old and resides in Springfield, PA with wife Jackie and sons Danny and Joey. His occupation is a carpenter foreman in the carpenters union. Dan enjoys coaching and watching his kids play sports. He also enjoy spending time with family.

Emily Holl is the Director of The Sibling Support Project at Kindering, the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental and health concerns. Emily is a social worker, author, and trainer who has provided workshops and groups for siblings and families, presented extensively on sibling issues, and has conducted and published sibling research. A sibling, and board member of the national Sibling Leadership Network, Emily has written about her experiences in blogs, magazines and books such as “Thicker than Water.” She was a co-editor of “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities,” published by Woodbine House in 2014. Emily earned a Bachelor of Arts from the University of Massachusetts, a Master of Fine Arts from Columbia University, and a Master of Social Work from Hunter College at the City University of New York.

Connect with Emily: 

  • https://siblingsupport.org/
  • https://www.facebook.com/TheSiblingSupportProject 
  • https://www.instagram.com/siblingsupportproject/
  • https://twitter.com/emilyhollsibli1 
  • https://www.linkedin.com/company/sibling-support-project/
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:

  • https://www.linkedin.com/in/hendersonmindy/ 
  • https://www.instagram.com/mindyhendersonspeaks/

10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts & Recipes

53m · Published 03 Dec 19:22
Need a last-minute gift-giving idea? You’re in luck because in this episode, we are talking all about fun do-it-yourself crafts and gift-giving, recipes and more. We have two guests joining us who are known for their art, entertaining and baking skills and we are all sharing ideas for how to make do-it-yourself easy AND accessible.

Campfire Bars Recipe by Therese Gabriel

Homemade Holiday Gifts

Transcript

Guests:

Casey Stark lives in the Milwaukee Suburbs with her roommate Matt and their dog Mollie. She was diagnosed with Spinal Muscular Atrophy type II at the age of two and uses a power wheelchair. Casey graduated from the University of Wisconsin – Whitewater with a degree in Cellular Biology and obtained a graduate certificate in Cytotechnology from the University of Wisconsin – Madison.

She currently works full time as a Research Compliance Coordinator, where she assists in ensuring that necessary approvals are in place for medical research studies. Casey also has a part time job at a local dog training company, where she provides assistance in the office and teaches group classes.

Casey has always had a passion for art and being creative. Her passion for art began when she started drawing horses. She continues to grow artistically by trying new techniques and crafts - such as painting, resin, and glass etching. Casey loves creating personalized gifts and artwork that she can share with others. She recently opened her own Etsy shop, The Barking Brush, where she paints personalized pet portraits.

Recommendations & More from Casey:

  • Tool Recommendations:
    • Paint brush bucket/holder
    • Sta-wet Palette
  • Etsy Shop - https://www.etsy.com/shop/TheBarkingBrush
  • Website - https://www.thebarkingbrush.com


Therese Gabriel is a Family Care & Support Specialist who has been with MDA for over 13 years. She has stated that meeting the many amazing MDA families, camp volunteers, and colleagues during her time in this role is one of the many great blessings in her life.

Born and raised in St. Louis, MO, she is the mother of 6 adult children and is expecting her 6th grandchild next year. She previously taught Kindergarten and First Grade, served as Director of the St. Louis County Parks program, and designed and decorated new homes for a local building company.

Therese also spent many years as a stay-at-home mom; it was during this time that her passion for cooking and baking came to the forefront. She wrote 12 cookbooks, hosted a local cooking show, and opened a Tearoom where she served recipes from her cookbooks. Prior to the pandemic, she also hosted cooking classes out of her home.

She is well known amongst her colleagues, family, friends, and peers for her impeccable and creative hosting, cooking, crafting, and decor skills. In addition to cooking and baking, Therese loves to paint and create, work in her garden, and decorate her home – both inside and out - for the seasons. In her free time, Therese also enjoys traveling and visiting family.

Connect with Therese: 


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/

9: Episode 9 - Combating the Stress of the Holidays

30m · Published 03 Dec 18:13
The holidays can be a fun, festive time of year. There are decorations, music, parties, food...but for many, the holidays can be an incredibly stressful time. And when dealing with an illness or disability, like a neuromuscular disease, while the holidays can still be lots of fun, there are also additional circumstances that can increase our stress.

In this episode, we will tackle some of these difficult topics and provide some suggestions for how to handle holiday stress.

Transcript

Paige Lembeck, PhD is a Pediatric Psychologist at the Children’s Hospital of Philadelphia (CHOP). Prior to coming to CHOP, she worked as a Pediatric Psychologist and Assistant Clinical Professor at the Yale Child Study Center, where she provided therapy and consultation services within several Neurology clinics, including the multidisciplinary Muscular Dystrophy Association (MDA) Clinic. Her clinical and research interests include issues related to adjustment to illness, family communication in the context of serious illness, and grief and loss. 

Dr. Lembeck received her doctorate in school psychology at the University of Nebraska-Lincoln. Subsequently, she completed her internship and fellowship at St. Jude Children’s Research Hospital, where she provided services to youth with cancer and other catastrophic diseases.

Connect with Dr. Lembeck:

Resources:

  • American Psychological Association - Holiday Stress Resource Center: https://www.apa.org/topics/stress/holiday 
  • MDA Resource Center: https://www.mda.org/care/mda-resource-center 
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/

7: Episode 7: Access to the World: Accessibility in Our Homes

46m · Published 18 Nov 16:10
This month, we continue our series on “Access to the World,” with a look at architecture. In this episode, Mindy speaks with Paul Robertson who lives with Limb Girdle Muscular Dystrophy, type 2J. Paul recently built a new home to suit his changing mobility and joins us to discuss the building process and what he did to make his new home accessible.

Transcript

Guests:

1. Paul Robertson is a businessman and entrepreneur from Maryland. He was diagnosed with limb girdle muscular dystrophy is in his 30s and has not let that slow him down. After years of dealing with mobility challenges, Paul decided it was time to not only become a champion and spokesperson for muscular dystrophy, but also use his talent and passion for fishing, along with his business relationships, and align them with his dedication to increasing research funding, awareness, and support for the Muscular Dystrophy Association (MDA).

In 2015, Paul wrote a letter to MDA’s CEO at the time saying he wanted to start a partnership with the MDA. He got a call the day his letter was delivered. And so, Fishing for Muscular Dystrophy was officially formed in a strategic alliance with MDA. FFMD is a professional full-time offshore fishing team that competes at the highest attended and most publicized events on the East Coast and Gulf of Mexico, and attends numerous events to support our partner network of top tier corporations. In the future, FFMD will add to the program with a salt water in-shore team and freshwater bass team, each led by another person with a muscle disease and passion for fishing.

Through tournament winnings, local galas and golf tournaments chaired by Paul, FFMD and Robertson have been able to raise more than $2m in support of muscular dystrophy.

For More Information & to Follow Fishing for MD: 

Twitter: https://twitter.com/FishingForMD
Facebook: https://www.facebook.com/Fishingformd/?fref=ts
LinkedIn: https://www.linkedin.com/company/fishing-for-md-muscular-dystrophy-llc/
Website: https://www.fishingformd.com

2. 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 Fall of 2022.

Connect with Mindy:

LinkedIn: https://www.linkedin.com/in/hendersonmindy/
Instagram: https://www.instagram.com/mindyhendersonspeaks/

8: Episode 8: Access to the World: Accessibility in Commercial Architecture

33m · Published 18 Nov 16:10
This month, we continue our series on "Access to the World," with a look at architecture. In this episode, Mindy speaks with Dominic Marinelli. Dominic is talking all about building codes in commercial architecture to make buildings accessible, how those codes change and evolve year to year, and how we can all do our part to make buildings more accessible.

Transcript

Guests: 

1. Dominic Marinelli has been with the United Spinal Association for 25 years. Mr. Marinelli provides continuing education to members of the American Institute of Architects (AIA) and the Society of American Registered Architects (SARA). He is a Contract Instructor for the International Codes Council (ICC) and an Adjunct Faculty Member at Pratt’s Center for Continuing & Professional Studies in New York City.

Mr. Marinelli is a certified Accessibility Specialist/Plans Examiner by the International Code Council and serves on various committees including American National Standard Institute Residential Committee which he serves as Chair. He also represented United Spinal Association on the US Access Board’s Emergency Transportable Housing Advisory Committee.

Mr. Marinelli holds a Master of Science from the State University of New York at Buffalo. He is certified in code enforcement by the New York State Department of State Codes Division and as an Accessibility Specialist/Plans Examiner by the International Codes Council (ICC).

For More Information & to Follow Accessibility Services: 

Twitter: https://twitter.com/UnitedSpinal
Facebook: https://www.facebook.com/unitedspinalassociation
LinkedIn: https://www.linkedin.com/company/united-spinal-association/
Website: http://www.accessibility-services.com
American National Standard Institute for Accessible and Useable Building: http://www.mzarchitects.com/wp-content/uploads/2015/03/ansi.a117.1.2009.pdf
ADA: https://www.ada.gov 
Email ideas for consideration to [email protected] 

2. 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 Fall of 2022.

Connect with Mindy:

LinkedIn: https://www.linkedin.com/in/hendersonmindy/
Instagram: https://www.instagram.com/mindyhendersonspeaks/

6: Episode 6: Talent for Hire!

49m · Published 08 Oct 04:00
October is Disability Employment Awareness Month, so on this episode of Quest Podcast, we’re exploring the world of employment for individuals with disabilities.

Despite a huge talent-pool of candidates in the U.S., only approximately 29% of individuals with disabilities hold positions in the current workforce. In this conversation, we’re discussing why that is, what is being done to improve that statistic and how we can all use our voices to make a difference.

For more information, watch this MDA webinar on Employment Rights for People Living with a Disability, go to https://www.youtube.com/watch?v=kqE2LXcu0bs.

We'd LOVE to have you as a member of our grassroots advocacy network. There are two easy ways you can sign up. Go to mda.org/advocacy or text MDAUSA to 504-57.

Transcript

Guests:

Charlotte Dales
Co-founder and CEO of Inclusively, the professional network and employment platform driving inclusion and opportunities for people with disabilities in the workplace. Charlotte's cousin Cameron became the first licensed aesthetician in the state of Florida with Down syndrome and after witnessing Cameron's career fulfillment, she became passionate about replicating her employment success story for all people with disabilities and started Inclusively.

Before launching Inclusively, Charlotte started her career in finance with Deutsche Bank in London working with trading desks around the world. After five years, she left her bank job and co-founded her first company, CAKE Technologies, a mobile payment and reservation application for restaurants and bars which scaled to over 200 restaurants in London and was acquired by American Express. Charlotte's experience in technology and startups has allowed Inclusively to provide a new technology solution to drive authentic Diversity and Inclusion in the workplace, helping companies acquire and retain top talent through a human-centered algorithm designed to optimize for the success of job seekers based on their needed accommodations to build sustainable livelihoods and careers. Under Charlotte's leadership, Inclusively is proud to be leading traditional recruitment into a new era of authentic inclusion. Charlotte graduated from University of Colorado, Boulder and lives in Richmond, Virginia with her husband and daughter.

Facebook: https://www.facebook.com/workInclusively/
LinkedIn: https://www.linkedin.com/company/workinclusively/
Instagram: https://www.instagram.com/workinclusively/
Website: https://inclusively.com/

Annie Moore
VP of Talent Operations at Inclusively, an innovative employment platform connecting candidates with disabilities, mental health conditions, and chronic illnesses to inclusive employers. Annie began her career at an international staffing firm, and then moved into the world of boutique recruitment. Annie has experience recruiting professionals from entry-level to the C-suite, across most industries and company sizes. Annie is based in New York, NY.

Sarah Schwegel
Organizing and Advocacy Specialist at Paraquad. In 2015 Sarah graduated from Maryville University with her Bachelor’s in Rehabilitation. In 2018 she graduated from Saint Louis University with a Master’s in Public Administration. Before she started working at Paraquad in the fall of 2019 Sarah worked in Diversity and Inclusion at Nestle Purina PetCare from 2015-2017, as a Graduate Assistant in the Political Science Department at Saint Louis University from 2017-2018, and then from 2018-2019, Sarah was the Youth Transition Coordinator at Starkloff Disability Institute. She is passionate about helping people with disabilities become as independent as possible through self-advocacy and policy change.

Resources Recommended by Sarah:
  • Disability Questions: https://www.eeoc.gov/pre-employment-inquiries-and-disability
  • ILRU (where to find a CIL): https://www.ilru.org/projects/cil-net/cil-center-and-association-directory
  • Continued Medicaid Eligibility (Section1619(B)): https://www.ssa.gov/disabilityresearch/wi/1619b.htm
  • JAN – Job Accomodation Network: https://askjan.org
Facebook: https://www.facebook.com/paraquad
LinkedIn: https://www.linkedin.com/company/paraquad
Website: https://www.paraquad.org
Email: [email protected]

Mindy Henderson
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 Fall of 2022.

LinkedIn: https://www.linkedin.com/in/hendersonmindy
Instagram: https://www.instagram.com/mindyhendersonspeaks

5: Episode 5: Access to the World: Hotels

24m · Published 08 Sep 01:00
 This next episode in our "Access to the World" series focuses on hotel accommodations for individuals with disabilities. accessibleGO is a travel website, specializing in accommodations for disabled travelers. During this conversation we discuss the challenges involved in making travel arrangements for those with special accessibility needs and how accessibleGo is helping to solve the problem to make travel easier for individuals with disabilities. Because we like to focus on solutions around here, we are also talking about how to best advocate for better accommodations, and how individuals can set themselves up for success when planning a trip.

Transcript

Guests:

Miriam Eljas
Miriam Eljas is the Co-Founder & CEO, accessibleGO. She is a serial entrepreneur who founded and exited a media company in NYC.

Miriam left her managerial role in business development at a OurCrowd, a leading equity crowdfunding platform, to start accessibleGO, an award-winning travel site for people with disabilities offering bookings, reviews and community.

accessibleGO won the booking.com regional competition for startups with a social impact and has appeared in AARP, New Mobility Magazine and Travel & Leisure. Miriam has also served as a mentor for new companies at several entrepreneurship programs.

Miriam was inspired to launch accessibleGO because of her mother Emma Eljas, a wheelchair user who had Multiple Sclerosis.

Facebook: https://www.facebook.com/accessiblego
LinkedIn: https://www.linkedin.com/company/accessiblego
Instagram: https://www.instagram.com/accessiblego
Website: https://accessiblego.com/home

Mindy Henderson
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 Fall of 2022.

LinkedIn: https://www.linkedin.com/in/hendersonmindy
Instagram: https://www.instagram.com/mindyhendersonspeaks



4: Episode 4: Access to the World: Air Travel

36m · Published 08 Sep 00:00
The second in our "Access to the World" series, this episode focuses on the unique challenges air travel presents to individuals who use wheelchairs. We will discuss the current state of air travel and the inconvenience, and emotional strain it causes travelers who use wheelchairs. Then, we turn the tables to talk about solutions. The work that is being done around legislation and aircraft crash-testing and modification is phenomenal, but these things take a village to bring to fruition. Our guests discuss the amazing work that is being done to improve air travel for wheelchair users and how we can all get on board to help make real change happen.

To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest.

To learn more about MDA’s grassroots advocacy program, or to join us in our advocacy efforts, please go to mda.org/advocacy or text MDAUSA to 504-57.

Additional Resources & Information:

  • To file a complaint with the Department of Transportation regarding damage to wheelchairs or other issues related to your experience as a traveler with a disability: https://tinyurl.com/9p4xe3zz
  • FAA Reauthorization Act: https://tinyurl.com/25kj2wpn
  • Air Carriers Access Amendments Act (ACAAA): https://tinyurl.com/d9k3hdwe
  • To support the Air Carriers Access Amendments Act (ACAAA) - https://tinyurl.com/83cmnedj
Transcript

Guests:


Chris Rosa, Ph.D.
Proudly serves as a member of MDA’s Board of Directors.

Chris serves as Assistant Vice Chancellor for Student Inclusion Initiatives at the City University of New York, the nation’s largest urban public university system. In this role, he designs and leads programs that promote access, equity, and inclusion for students who have historically under-participated in higher education, including CUNY’s 3,200 student veterans, its 17,000 LGBTQI students, its more than 6,000 undocumented students, and its more than 11,000 students with disabilities.

A published disability studies scholar, he serves as a faculty member for CUNY’s Master’s Program in Disability Studies and has served as the Co-Executive Officer of the Society for Disability Studies, the international professional association for Disability Studies Scholars.

He is the creator of the "CUNY LEADS" program, a model career readiness program for college students with disabilities that empowers them to achieve competitive employment are more than twice the national rate.

A staunch advocate for economic justice for people with disabilities, Chris has served as the Chair of the Executive Committee of the U.S. President’s Committee on Employment of People with Disabilities (now known as the U.S. DOL’s ODEP).

For his leadership in expanding employment opportunities for New Yorkers with disabilities, Chris was awarded a “Liberty Medal” by the New York Post in 2012.

For More Info:
City University of NY: https://www.cuny.edu
CUNY Student Inclusion Initiatives: https://www.cuny.edu/current-students/student-affairs/student-life/office-of-student-inclusion-initiatives-osii/

Michele Erwin
Michele Erwin has a successful career in the Fashion Industry, having worked for notable fashion houses, such as Ralph Lauren and Calvin Klein. After her son was diagnosed with SMA (Spinal Muscular Atrophy) and experiencing the difficulties of traveling with a wheelchair she knew something needed to be done.

Taking her business acumen and passion for projects she embarked on the journey of getting wheelchairs crash tested for commercial flight and created All Wheels Up. All Wheels Up currently is the only organization in the world Crash Testing Wheelchair Tie Downs and Wheelchairs for Commercial Flight.

This team ultimately found out existing wheelchair restraints from Q’Straint used in Accessible Cars and Buses can exceed the FAA requirement of 16 G’s. They are now getting started on working with regulators such as the FAA, Airlines, Airplane Manufacturers, and Congress to see how we can make Airplanes Accessible.

Being able to fly on Airplanes from the safety of your wheelchair is something the disability community has wanted for years. Their solution is for those who use electric wheelchairs, as well as properly modified Manual Wheelchairs, to independently maneuver themselves onto the plane with dignity and safety.

LinkedIn: https://www.linkedin.com/company/all-wheels-up-inc
Instagram: https://www.instagram.com/AllWheelsUpInc
Website: https://www.allwheelsup.org/

Mindy Henderson
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 Fall of 2022.

LinkedIn: https://www.linkedin.com/in/hendersonmindy
Instagram: https://www.instagram.com/mindyhendersonspeaks

3: Episode 3: Access to the World: We Carry Kevan

39m · Published 20 Jul 07:00
For individuals with NMD, or any disability, travel is complicated by all kinds of logistical issues and accessibility barriers. There are places and experiences that are "off-limits" to individuals who use wheelchairs because certain destinations just aren’t accessible, or accessible enough. Kevan and friends have broken through those barriers by creating a nonprofit organization that developed a special "adult-size" backpack so that Kevan and his friends could go explore Europe and China, without being tethered to a wheelchair. The backpack allowed his friends to carry him, accessing the parts of these countries he would not have been able to experience from his wheelchair. They have created two documentaries from footage shot from these trips, largely because..."they wanted the proof because no one would have believed it."

To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest.

Transcript

Guests:

Kevan Chandler
Kevan Chandler grew up in the foothills of North Carolina. He is the youngest of three siblings and the second to be diagnosed with spinal muscular atrophy, type 2, a rare neuromuscular disease. He has a Bachelor of Arts degree in counseling from John Wesley College. In the summer of 2016, Kevan and his friends took a trip across Europe, leaving his wheelchair at home, and his friends carried him for three weeks in a backpack.

An avid storyteller, Kevan has authored several books, including a memoir of their adventures, We Carry Kevan. He travels and speaks worldwide about his unique life with a disability and has been the featured speaker for a Tedx Talk in Ireland, Talks at Google, and the Rare Disease Conference. In 2017, he was honored as a RARE Champion of Hope by Global Genes. He is also the founder of the nonprofit organization, We Carry Kevan.

Facebook: https://www.facebook.com/wecarrykevan
Instagram: https://www.instagram.com/wecarrykevan
Website: https://www.wecarrykevan.com/

Luke Thompson
Luke Thompson is a friend, travel companion and partner in "We Carry Kevan"

Mindy Henderson
Mindy Henderson is your host, and happens to have been diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old. Today, Mindy is the host of this podcast, and is also a motivational speaker and a writer, with her first book set to hit book stores in Fall of 2022.

LinkedIn: https://www.linkedin.com/in/hendersonmindy
Instagram: https://www.instagram.com/mindyhendersonspeaks

2: Episode 2: Buses, Trains & Automobiles - Getting from Point A to Point B

39m · Published 22 Jun 07:00
For anyone with NMD or other disabilities, getting from one place to another can be a challenge. On today's episode of Quest Podcast, we will be discussing the various options in accessible ground transportation, from driving adapted vehicles, to riding on buses and trains. We'll examine the various modes of transportation, what systems have been designed well and which ones...maybe leave a little to be desired...and how YOU can get involved to advocate for improvements to public transportation.

To get involved in advocating for better transportation for individuals with disabilities, check out the information and resources below:

  • Press release for the ASAP Act from Sen. Tammy Duckworth's office: https://www.duckworth.senate.gov/news/press-releases/duckworth-brown-and-casey-introduce-legislation-to-make-public-transit-more-accessible
  • More details from Access Living in Chicago: 
    • Senate version, S. 1680
    • House version, HR 3317
    • Senate Banking, Housing & Urban Affairs Committee, members here
    • CCD letter
    • Original ASAP Plan from Chicago
    • Link to Access Living ASAP webpage
    • Form to have organizations sign up in support
To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest.

Transcript


Guests:


Jessica Murray
Jessica Murray earned her Ph.D. in Developmental Psychology at The Graduate Center, CUNY in 2020, focusing her research on daily travel and the ways that inaccessibility limits the fulfillment of psychological needs for autonomy, relatedness, and competence among people with disabilities. She advocates improving transit accessibility in New York City and chairs the Advisory Committee for Transit Accessibility (ACTA) for New York City Transit. She will also be appearing in a documentary about accessible transit, coming soon!
Trailer: https://www.youtube.com/watch?v=Ap6aULx9Hs8

Facebook: https://www.facebook.com/theBiggestObstacle
Twitter: https://twitter.com/jekaanne
Instagram: https://www.instagram.com/thebiggestobstacle

Chad Strowmatt
Chad Strowmatt is an Occupational Therapist with 33 years of experience. He earned his bachelors degree from Texas Tech University Health Sciences Center and his Doctor of OT at Rocky Mountain University for Health Professions. He has owned and operated Strowmatt Rehabilitation Services, Inc. since 1993 and has served as President of the Association of Driver Rehabilitation Specialists (ADED) in 2004. He has experience in all of the adaptive equipment options required to help people accommodate for changes in physical function.

Facebook: https://www.facebook.com/strowmattrehabservices
Instagram: https://www.instagram.com/strowmatt_rehab/
Website: https://driverrehabservices.com/
TikTok: https://www.tiktok.com/@strowmattrehab

Josh Cueter
Josh Cueter is from Troy, Michigan and is a recent graduate of Michigan State University. During his last semester he worked as an intern with the Equal Employment Opportunity Commission and the Muscular Dystrophy Association in Washington D.C. While there he was able to take advantage of the different means of accessible transportation that the city had to offer.

Facebook: https://www.facebook.com/jacueter
LinkedIn: https://www.linkedin.com/in/josh-cueter-8b9896140

Mindy Henderson
Mindy Henderson is your host, and happens to have been diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old. Today, she drives an adapted minivan that looks like the cockpit of an airplane, and is also a motivational speaker and a writer, with her first book set to hit book stores in Fall of 2022.

LinkedIn: https://www.linkedin.com/in/hendersonmindy
Instagram: https://www.instagram.com/mindyhendersonspeaks
Website: https://www.mindyhendersonco.com/

MDA Quest Podcast has 41 episodes in total of non- explicit content. Total playtime is 31:23:23. The language of the podcast is English. This podcast has been added on December 22nd 2022. It might contain more episodes than the ones shown here. It was last updated on May 19th, 2024 02:42.

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