On this episode of the CMT 4 Me, Chris and Liz O introduce Edmonton CMTA Branch leader Victoria Berezovich. Victoria is known as CMT Barbie because she is a model with Kello Inclusive. She’s also one of the stars of the docu-series Push which takes place in Canada and gives viewers an inside look at a diverse group of people living with physical disabilities. Are you ready to be moved by Victoria's story? Here are three impactful moments you won't want to miss:- Finding a supportive community: Victoria emphasizes the importance of having a supportive community while living with a progressive disease like CMT. She shares her experiences with the CMT community and her advocacy work, which have helped her find support and strength.- Advocacy work: Victoria is a passionate advocate for people with disabilities, and her work has made a significant impact in the CMT community. She has been actively involved in advocacy work and has raised her hand to be a CMTA branch leader in Edmonton, Canada. She encourages others to get involved in advocacy work as well.- “Push”-ing boundaries Victoria talks about her experience on the docu-series "Push," available on the GEM Network in Canada, which takes you inside and intimately with a very special disabled group in Edmonton, coined the “Wheelie Peeps.” The show follows people with disabilities as they navigate life through good times and bad. Victoria shares how the show has helped her push boundaries and break stereotypes, and how she found support through acceptance, knowledge, and one big ambition - to live life to the fullest.Don't miss this inspiring conversation with Victoria Berezovich! Listen to the full episode of the CMT 4 Me podcast to learn more about her experiences and advocacy work. And if you want to get involved in the CMT community, consider participating in the Cycle 4 CMT event or other advocacy work. Together, we can make a difference!For more information about CMT and to support the CMTA, please visit www.cmtausa.org

In this episode, we hear from Jeff Seitzer, a stay-at-home dad, and author of "The Fun Master," who was diagnosed with CMT at a young age. Despite facing incredible challenges, Jeff has shown remarkable resilience and positivity. He shares his story of how he learned to find joy in the face of hardship and triumph over tragedy.Jeff discusses his journey of finding what works best for him when it comes to managing CMT. He emphasizes the importance of discovering what works best for each individual, which may require some experimentation, but the effort is worth it in the end.Jeff also shares his deeply personal journey of coping with loss after losing his young son Ethan while trying to save their lives while swimming in the powerful currents of Lake Michigan. He talks about how he and his family have been coping with grief and how it has affected his life with CMT.Despite the challenges he faced when his son Ethan was born with special needs, including surgeries, hospitalizations, breathing and swallowing problems, hearing loss, and a difficult social environment, Ethan thrived and taught Jeff to take things as they come. Later, Jeff and his family adopted Penelope from China, and Jeff learned that true happiness comes from putting others first and living in the moment.Jeff's journey of resilience and positivity is chronicled in his book, "The Fun Master," where he shares valuable insights and lessons he learned through his experiences.Jeff's story is a reminder that even in the darkest of times, there is light at the end of the tunnel. With a positive attitude, determination, and the support of loved ones, anyone can overcome any obstacle.Jeff Seitzer is a finalist in the 2022 Best Book Award and is serving as a distinguished reader in the Do the Write Thing Challenge in Chicago, a program that encourages kids to write essays about how violence affects their lives. Winners of the challenge will travel to DC to speak with leaders about reducing violence that affects their futures.You can learn more about Jeff and his work by visiting his website at jeffreyseitzer.com. His book, "The Fun Master," is available at major online retailers such as Amazon, Barnes and Noble, and Target, as well as local bookstores.Don't forget to follow the CMT 4 Me Podcast for more inspiring stories like Jeff's and to stay up to date on the latest developments in the CMT community. You can follow us on Instagram @CMT4Me and on Facebook at https://www.facebook.com/profile.php?id=100087317297516.Please leave us a positive review on your favorite podcast platform, as this really helps spread awareness about CMT. For more information about CMT and to support the CMTA, visit their website at www.cmtausa.org. You can also join the CMTA Emotional Support group at https://www.cmtausa.org/emotional-support-group/, read Liz O's Blog at https://bestfoot4wardblog.com/tag/elizabeth-ouellette/, donate to the CMTA at https://www.cmtausa.org/ways-to-give/imagine-whats-next/, and check out Camp Footprint if you have children with CMT at https://www.cmtausa.org/get-involved/camp-footprint/.CMT 4 Me is hosted by Chris Ouellette and Elizabeth Ouellette, produced by iRonick MediaFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

In this episode of CMT 4 Me, Chris and Liz O. meet with Dan and John Morgan, two brothers with CMT to discuss their experiences living with the disease.  As brothers, Dan and John have a unique bond and understanding of each other's struggles with CMT despite having contrasting daily lives. Main Takeaways:-Life is full of challenges that will test your limits and it's important to accept that and focus on what you can do to achieve better outcomes.-Dan and John also share their experiences with Cycle 4 CMT, an annual fundraiser with the goal of raising funds to find a cure for CMT. -The brothers offer different perspectives on dating, fashion, and the differences between city and country living.Get ready to be inspired as you listen in on the lives of two remarkable brothers, Dan and John Morgan, living with CMT. In this episode, they offer candid insights on their journey, highlighting the importance of resilience, adaptability, and positivity when faced with adversity. Their message is one that encourages us all to take life head-on, no matter what it throws at us, and to embrace the power of a positive mindset in the face of challenges. In their honest and uplifting conversation, Dan and John provide valuable insights on how to adapt and thrive in life, both personally and professionally, despite living with CMT. They invite listeners to gain a newfound appreciation for the strength of the human spirit in the face of adversity.New episodes featuring inspiring people from the CMT community drop every third Thursday of the month.Follow us on Socials!Instagram @CMT4MeFacebook https://www.facebook.com/profile.php?id=100087317297516Please leave us a positive review on your favorite podcast platform! This really helps spread awareness about CMT!Our Official Website https://www.podpage.com/cmt4me/ Don’t forget to join our email list for updates!Visit the Charcot-Marie-Tooth Association official website www.cmtausa.orgJoin the CMTA Emotional Support group https://www.cmtausa.org/emotional-support-group/Read Liz O’s Blog https://bestfoot4wardblog.com/tag/elizabeth-ouellette/You can make a difference! Donate to the CMTA https://www.cmtausa.org/ways-to-give/imagine-whats-next/Have children with CMT? Check out Camp Footprint!  https://www.cmtausa.org/get-involved/camp-footprint/CMT 4 Me is Hosted by Chris Ouellette and Elizabeth OuelletteAn iRonick Media Production Released March  16th  2023For more information about CMT and to support the CMTA, please visit www.cmtausa.org

In this episode of the CMT 4 Me podcast, we are joined by Ashley, a rehabilitation engineer with CMT. Ashley shares with us what a typical day looks like for her and what her focus is, which is to use her engineering background to improve people's lives. Ashley works with individuals to modify their homes and work sites to make them more accessible, as well as helps students with technology to complete their assignments.During the conversation, Ashley shares some of the amazing projects she has worked on, including creating a device to help someone roll napkins around silverware in a restaurant, and an assistive technology system for a woman to play with her dog. Ashley explains that she and other rehab engineers work one-on-one with individuals, customizing products for each person's unique needs, and building them in the local technology lab.  As a person living with CMT, Ashley has plenty of advice for fellow CMT community members on how to adjust their surroundings to make them more CMT-friendly. We were impressed with Ashley's creativity and dedication to helping others and we hope you enjoy this episode as much as we did! Here are five takeaways from our conversation with Ashley:Ashley is a rehabilitation engineer who uses her skills to make people's lives better.Ashley works with individuals to modify their homes and work sites to make them more accessible, as well as helps students with technology.Ashley has worked on some amazing projects, including a device to roll napkins around silverware and an assistive technology system for a woman to play with her dog.Ashley and other rehab engineers work one-on-one with individuals, customizing products for each person's unique needs.Ashley and her team build the products they design in the local technology lab.Tune in to hear Ashley’s  inspiring journey and the valuable advice she offers to those living with CMT.New episodes featuring inspiring people from the CMT community drop every third Thursday of the month.Follow us on Socials!Instagram @CMT4MeFacebook https://www.facebook.com/profile.php?id=100087317297516Follow Ashley on socials! Ashley Farr McLeroy on Facebook LifeWithALimp on Instagram Please leave us a positive review on your favorite podcast platform! This really helps spread awareness about CMT!Our Official Website https://www.podpage.com/cmt4me/ Don’t forget to join our email list for updates!Visit the Charcot-Marie-Tooth Association official website www.cmtausa.orgJoin the CMTA Emotional Support group https://www.cmtausa.org/emotional-support-group/Read Liz O’s Blog https://bestfoot4wardblog.com/tag/elizabeth-ouellette/You can make a difference! Donate to the CMTA https://www.cmtausa.org/ways-to-give/imagine-whats-next/Have children with CMT? Check out Camp Footprint!  https://www.cmtausa.org/get-involved/camp-footprint/CMT 4 Me is Hosted by Chris Ouellette and Elizabeth OuelletteAn iRonick Media Production Released February 16th 2023For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Happy New Year! Thank you for tuning into the first CMT 4 Me episode of 2023! We are excited to kick off the year by sharing the story of Maddie, a young woman in grad school at the University of Virginia who was diagnosed with Charcot-Marie-Tooth Disease at age 12. In this episode, Maddie shares:Insight into how she copes with CMT and deals with inner dialoguesTips for newly diagnosed individualsStrategies for introducing herself as a person with CMT to the worldThe importance of support systems in navigating life with CMTTune in to hear Maddie's inspiring journey and the valuable advice she offers to those living with CMT.New episodes featuring inspiring people from the CMT community drop every third Thursday of the month. Follow us on Socials! Instagram @CMT4MeFacebook https://www.facebook.com/profile.php?id=100087317297516Follow Maddie on Socials FacebookInstagramPlease leave us a positive review on your favorite podcast platform! This really helps spread awareness about CMT!Our Official Website https://www.podpage.com/cmt4me/ Don’t forget to join our email list for updates! Visit the Charcot-Marie-Tooth Association official website www.cmtausa.orgJoin the CMTA Emotional Support group https://www.cmtausa.org/emotional-support-group/Read Liz O’s Blog https://bestfoot4wardblog.com/tag/elizabeth-ouellette/You can make a difference! Donate to the CMTA https://www.cmtausa.org/ways-to-give/imagine-whats-next/Have children with CMT? Check out Camp Footprint!  https://www.cmtausa.org/get-involved/camp-footprint/CMT 4 Me is Hosted by Chris Ouellette and Elizabeth OuelletteAn iRonick Media Production Released January 19th 2023For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Do you try to ignore your CMT? Do you keep those feelings bottled up inside because you don’t have anyone with whom you can relate? Do you think no one will understand? Maybe you feel like it is nobody’s business but your own...Psychotherapist David Tannenbaum felt the same way until he connected with the CMTA community, where he found freedom, acceptance, and unconditional love. Attending CMTA-led support groups, branches, and patient conferences, David met many people from all walks of life and his apprehension and fears faded into the background.Today, David is an integral part of the CMTA, where he helps those with CMT find joy and fulfillment through mindfulness, meditation, and gratitude. Listen. Learn. Love.David has been practicing psychotherapy for over 30 years (http://davidtannenbaumtherapy.com). David also volunteers for CMTA where he sits on the Advisory Board, runs the online Emotional Support Group (https://www.cmtausa.org/emotional-support-group/), and writes the “Ask David” column in the quarterly CMTA Report.His areas of specialty are:~ Finding meaning and purpose.~ Stress-related issues, incorporating relaxation techniques into daily life.~Developing the practice of mindfulness.~Helping to live and thrive with a physical disability.~Teaching to live in a more heart-centered way and experience a simple and profound intimacy that we all long for.~Dealing with grief and loss and learning to find joy once again.~Healthy aging.~Understanding and exploring the particular concerns of the LGBT community.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

An old soul with a big heart, Jonah Berger brings wisdom and youthful energy to every moment of every day. In this episode of CMT 4 Me, Jonah gets personal about his upbringing, family life, the Pickle Witch (yes, the Pickle Witch!), the CMTA's future leaders, and Camp Footprint – camp for kids with CMT. Explaining the success of Camp Footprint, Jonah points out, "This one-week sleepaway camp for kids with CMT is truly unique. Every camper fits in, feels free to let their guard down, and is given space to be vulnerable, real, and relaxed without the fear of being judged or perceived as different. There is no doubt in my mind – Camp changes lives." Jonah's spirit and uplifting energy are not only contagious but also motivating. His talent for storytelling and insightful personality will inspire you to move mountains.  Bio: Jonah has CMT 1X and joined the CMTA staff full-time in early 2020 as the National Youth Programs Manager and is thrilled to be serving the CMTA community by working to celebrate and engage the youth. Jonah has written two books: He Walks like a Cowboy: One Man's Journey Through Life With a Disability and The Strangest of Places, both available on Amazon for purchase. Jonah also has a website where you can find his He Walk Like a Cowboy podcast as well as his blog:  HeWalksLikeACowboy.comFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

The CMTA has evolved and grown exponentially over the past 20 years, and if you have not been around to witness the transformation, you need to listen to the voices of longtime CMTA volunteers and branch leaders Beverly and Frank Wurzel. Beverly and Frank Wurzel have spent the past 20 years of their lives spreading CMT awareness and raising funds for CMTA STAR research. Their raw determination, motivation and never-say-never attitudes are not only commendable but also incredibly awe-inspiring.  As Beverly walks you through her time at CMTA, Frank keeps everyone on their toes and in stitches. Married for 65 years, these two longtime CMTA advocates truly care about the people they serve, so much so, they consider their fellow CMTA members as second family. Bev is a connector of people; Frank is a committed supporter. Together, they are leaving a legacy of love, philanthropy and caring.  For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Julia and Herb Beron share a moving story of courage, resilience, and autonomy.  Julia's never known life without CMT. Having had falls, foot and knee surgeries, hearing loss, and a diagnosis of Type 1 diabetes, Julia, with her family's unconditional support, keeps moving forward with grace, independence, and self-confidence. Hear her story. Learn her secrets. Watch her future.  It's going to be amazing!HighlightsWho is Sally and how did she give Julia so much freedom?The best day of her life – where's the cat?Julia gives dating advice. You are going to love it!Rachael's  Practicality + Herb's Emotional Intelligence = Julia's BrillianceIf you had one wish? You won't believe their answers.*Herb Beron is a member of the CMTA Board of Directors and a  long-time supporter of CMTA.*Julia Beron is a previous member of the Youth Council, Co-Illustrator of the book, Walk A Mile In My Braces, and Co-Leader of the CMTA COMPASS Group for Young Adults with CMT.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Comin’ at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series focused on all aspects of CMT. Meet Chris and LizO Chris and Elizabeth Ouellette), dedicated siblings on a mission to magnify the voices of individuals with CMT, share their challenges and success stories, and raise awareness of Charcot-Marie-Tooth disease.HighlightsAs kids, they learned homelessness was not someone else’s problem.Giving back is so much more than pizza and donuts for Halloween.The incredible reasons why they Cycle 4 CMT.Out to kick CMT’s ass. No questions asked.Where it’s at: cycle4cmt.comFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Looking for a good Physical Therapist (PT)? Tips for CMTers by a PT with CMT: Kelly Chilson Dsc, DPT, COMT*Kelly addresses questions from the CMTA Facebook Discussion Group. *As an insider, Kelly gives advice on recovering well from reconstructive CMT foot surgery, with 3-year-old twins to boot!  *PT ALERT! When clients judge before thinking. WTH?*The happiness tip of the Month!  Kelly has been a PT for 15 years, focusing on orthopedics, balance, and neuromuscular disorders. Kelly also has CMT. In this podcast, she covers foot surgery, assistive devices, exercises, nutrition, mental health wellness, and the quest to find a CMT-savvy PT!   Kelly provides a one-stop-shop to health and well-being. If you came with questions, you’ll leave with answers!For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Direct, refreshing, and vibrant, Liane Schirmer talks about her late-set CMT diagnosis with humor and acceptance. As an actress in a world where roles are quite scarce for people with physical impairments, her career was on the line, and her future looked bleak. Fearing rejection, she questioned the sanity of pursuing a physically demanding and energy-draining job that required costume changes, specific shoes, and navigating a dimly-lit stage. She seriously struggled with self-doubt, fear, and a negative self-image. How long could she hide the diagnosis? Was her career over? As she lifted her mask of perfection, she discovered strength and humility. Listen to her unbelievable true story of success, loss, and renewal.Episode HighlightsLiane’s spirit animal is the rhinoceros. Find out why!A core group of friends and family is sacred.Just grab a stranger’s arm and ask for help!Enjoy the little things in laugh, and don’t forget to laugh.Who else hates cans with pull-up tabs?For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Tom duPont is a successful entrepreneur, community leader and family man living with CMT. Early in his diagnosis, he decided to meet CMT head-on by trying many different therapies, embracing those which slowed down the progression of his CMT symptoms. Tom’s persistence has paid off, as he can still golf, sail, work and walk his brand new 6-month-old Labrador! Unlike his 2 siblings, whose CMT is immeasurably worse, Tom believes in a healthy lifestyle and staying as active as possible. Join us for a tip-filled, uplifting podcast addressing braces, acupuncture, stretch therapy, massage, cervical chiropractic work, slow breathing, and so much more. The magical properties of walking sticks. Remembering Tom’s late brother, Michael.Jimmy Lee the janitor: Living according to his philosophy and principles.  Move it or lose it! For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Dr. Glenn Pfeffer reveals a fib he told his first CMT patient.No one with a crooked foot should live with it!The goal of CMT foot surgery? Make the foot flat.Avoid Amputation.Ankle fusion – No, thank you!Hope is alive.  Dr. Glenn Pfeffer is the Director of the Foot and Ankle Surgery program at Cedars-Sinai in Los Angeles. Having performed over 700 CMT foot surgeries, Dr. Pfeffer has dedicated his life to straightening the CMT foot, enabling people to regain their ability to walk with ease. Consulting with people globally, he continuously goes above and beyond for his patients, setting time aside on weekends and evenings to discuss individual cases.A perfectionist by nature, Dr. Pfeffer empathizes with your anxiety, fears, and doubts. Having experienced life-limiting foot problems his entire life, he understands pain, immobility, and frustration firsthand. With heartfelt passion, Dr. Pfeffer wants you to know, “Hope remains very much alive for the CMT patient.” Listen to this genuine conversation, then fix what you can before it is too late.Instagram: @CharcotMarieToothSurgeryGlenn B. Pfeffer, MD - Cedars-Sinai Medical Center DirectoryFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Feel the fear and do it anyway.The moment Bethany realized body and mind were sick.Overwhelmed, Anxious, and Depressed.The shocking things people say!Marriage: Support is a 2-way street.In her 30 years on this planet with CMT, author, CMT community advocate, teacher, and YouTube influencer, Bethany Meloche, has led a full and enriching life filled with adventure, travel, reflection, and passion. When COVID spread throughout the world, long shadows crept into her everyday existence, creating isolation, fear, illness, pain and loss of ability.With brutal honesty, Bethany describes her descent into despair, where the darkness threatened to swallow her whole. Ultimately, adversity never did stand a chance, as her strength and resiliency shone forth, providing fertile ground for profound growth and insight.Today, she takes us for a ride of a lifetime, where joy, possibility, and dreams are still mightily present.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Psychotherapist turned coach, author, and NeuroChangeSolutions trainer Abby Havermann, mom of a child with CMT 2A, focuses on taking charge of her life by consciously choosing who she wants to be every day. Incorporating the teachings of researcher Dr. Joe Dispenza, Abby is raising her son, Jaden, to connect with his emotions, find his inner power, and tap into his limitless potential. Abby has created a unique platform for Jaden to master his thoughts and move beyond perceived limitations using conversation, thought-provoking questions, breathwork, and meditation.Abby explains how your mindset and belief system affect everything in life, from what you think and feel to how you react to the external world. Learn, listen and share these empowering tools with your children, so they too will be able to move beyond personal limits with conscious decision-making and insight.For more information about CMT and to support the CMTA, please visit www.cmtausa.orgFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Kenny’s heart-felt narrative reveals the life of the man with a wicked sense of humor and a wealth of CMT knowledge. Despite his CMT-related breathing issues, upcoming foot surgeries, and chronic pain, his deep laughter defines a go-forward and don’t look back kind of attitude.  Kenny Raymond is an author, blogger, podcast host, genetic whiz, CMTA Advisory Board member and Facebook moderator. His website, the Criptid Sloth (thecryptidsloth.com), is a go-to resource for those seeking easy-to-understand explanations of a wide range of CMT topics.Kenny makes it his business to advocate for people with CMT every single day. Kenny spends free time sharing his knowledge and enlightening the non-initiate in tangible and meaningful ways. An autodidact at heart, Kenny learned all he could about his own CMT to help others understand the intricacies of a CMT diagnosis while busting myths and disarming misinformation. He’s a gift to the CMTA and an invaluable resource for the CMTA community.For more information about CMT and to support the CMTA, please visit www.cmtausa.orgFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

Katerina’s CMT symptoms seemed to materialize overnight. As a senior in high school, she went from being active and carefree to living with inexplicable pain and fatigue. Many docs chalked up her complaints to depression, stress, anxiety until, one day, she tested positive for a recessive type of CMT (CMTRIC), as did her three siblings. The odds of all 4 siblings having a recessive type of CMT is 1 in 250!Today, 21-year-old Katerina is a college student who shares her experiences through her blog, Beauty in the Pain. Even with her chronic illness and limitations, Katerina continues to serve others through seated dance, sharing her CMT story and encouraging others to live the best life possible, despite constraints.For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Stringing words together in captivating rhyme, CMTA Branch Leader and passionate volunteer Aron Taylor, mesmerizes with his stories of facing the challenges imposed by CMT from a very young age. Aron produced and released several hip-hop albums over the past 15 years, including CMT-related songs such as “The Life You Love” and “Supergimpin. Aron’s energy, inspiration, and enthusiasm will make your day shine. Listen, Learn, and Love!  Watch Aron in Action: https://www.youtube.com/watch?v=M2DNzRdBAPsFor more information about CMT and to support the CMTA, please visit www.cmtausa.orgFor more information about CMT and to support the CMTA, please visit www.cmtausa.org

CMTA CEO Amy Grey and CMTA Chairman Gilles Bouchard get real and personal as they discuss the CMTA’s ongoing success as the #1 CMT organization globally. This multi-dimensional dynamic duo, with deep roots in the charitable foundation profession and tech industry, sheds light on how the CMTA, a small but efficient organization, is setting standards of excellence in the non-profit sector. With the backing of our community, CMT clinicians, world-renowned scientists, researchers, and an increasing number of pharma partners, the CMTA is changing the world at an accelerated pace. Listen and learn how our CMT patient community has inspired, motivated, and influenced the growth of the CMTA and its mission - to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure. Our vision … a world without CMT. For more information about CMT and to support the CMTA, please visit www.cmtausa.orgFor more information about CMT and to support the CMTA, please visit www.cmtausa.org