Podcasts about sma spinal muscular atrophy

A trip down memory lane, as Fliss pulls out a conversation between herself and her cousin Wayne Smith which they had back in lockdown days in January 2021.Wayne has built an incredible community, bringing boxing and fitness into schools all across the UK delivered by him and his team at Olympia Boxing.With a number of personal challenges along his journey, Wayne is certainly someone to never give up. Despite when the odds are against him. His famous saying is "Forward Is Forward". And Fliss couldn't agree more,A true inspiring human who goes above and beyond for the people in his life and the communities her serves. Fliss feels very honoured to have Wayne as a cousin and to gift him this space to share his story. And to promote his fundraising challenge. We'll hear more from Wayne in the coming month or 2 after the big day on 21st April 2024. Link is below for you to donate.Waynes current fundraising challenge is to complete the London Marathon in a wheelchair to raise funds for Demelza, a charity which supports him and his family since his gorgeous daughter Esmé was diagnosed with SMA (Spinal Muscular Atrophy).Mentions in this episode, also include: Ringside Charitable Trust, Lee Selby, Chris Sanigar, Anthony Joshua, BT Sport, Skysports, James.A Wholeness Podcast is proudly sponsored by Earth & Soul Pizza in Bairnsdale. If you are local or travelling through Bairnsdale, use promo code LOVEFLISS to get a free large pizza when you buy one.

Step into the great outdoors with us in this special episode of our podcast, "Resonate." Join Molly, Ben, Ellie, Sophie, and Alicia as they share their incredible experiences from a weekend event designed to resonate with adults living with SMA (Spinal Muscular Atrophy).In this conversation, our guests take you on a journey through the beautiful landscapes, shared adventures, and profound connections they discovered at this fully accessible outdoor event. But it's not just about the event itself; our guests also delve into why they can't contain their excitement for the next one. From forging lifelong friendships to embracing the spirit of adventure, you'll discover the profound impact of these gatherings on their lives."Resonate" is a testament to the strength, camaraderie, and unbreakable spirit of individuals living with SMA. It's a reminder that the outdoors is a canvas where dreams are painted, and where life's most meaningful moments come to life.Tune in to this episode and let the stories of Molly, Ben, Ellie, Sophie, and Alicia resonate with your own sense of adventure and wonder.

Welcome to an inspiring episode of our podcast, where we delve into the remarkable journey of Sam and Alex, two extraordinary individuals living with SMA (Spinal Muscular Atrophy). In this heartwarming conversation, we explore "A Positive Mindset and Career Aspirations" and how their experiences have shaped them into the determined, optimistic, and vibrant individuals they are today. Despite the challenges they've faced, Sam and Alex radiate positivity and embody the best versions of themselves. Their resilience and zest for life testify to the indomitable human spirit. In a world where many 18-year-olds may take their positivity for granted, Sam and Alex's perspective offers a fresh and inspiring outlook. Join us as we journey through their university experiences, where they've embarked on intriguing projects that showcase their creativity and drive. From navigating the academic landscape to pursuing their unique interests, they share the ups and downs of their educational journey. But that's not all—Sam and Alex have a dream to write a sitcom based on their misadventures and shenanigans. Their humour and camaraderie shine through as they discuss this exciting project, showing their boundless imagination and determination. This episode is a reminder that a positive mindset can shape your outlook on life and your career aspirations. Sam and Alex's story is a testament to the power of resilience, determination, and the pursuit of dreams. Tune in now and be inspired by their incredible journey of optimism and ambition.#PositiveMindset #Zest #DisablityCareerAspirations #livingWithSMATHIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ You can contact SMA UK on the following social media platforms ⬇️⬇️ ▶ | INSTAGRAM: https://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...  If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Carolyn McMakin, MA, DC Kim Pittis, LCSP, (PHYS), MT 01:29 Adams Memorial 01:53 Covid Coma Footdrop 02:45 SMA Spinal Muscular Atrophy 02:46 Polarizing Negative Works 04:59 Nerve Damage - Hypoxia 12:55 ICE RICE and METH 25:54 Leave the Scar Tissue? 27:14 Cerebellum Decision 28:46 Why Use Multiple Units 33:02 Give Them Good Before You Take Out The Bad 35:24 Neck and Shoulder Pain = Ehlers-Danlos 41:40 Same Frequency on Channel A and Channel B? 44:02 CustomCare - Smaller Frequency Always On Top 46:05 Oral Dental Treatments 47:44 Polarized Negative Added To The Advanced 48:05 Updated Advanced in 2023 51:07 FSM is Not for Infections 53:11 Teething 54:15 94/94 Love - Vestibular Injuries

Join us today for a very special episode in which our dear friend, Chelsie Jenkins, shares her beautiful journey of raising and caring for her medically fragile, special needs daughter, Maggie. She will also walk us through the grief associated with Maggie's passing, as well as what she's doing now to continue to stay connected to Maggie and honor her memory through serving the SMA (Spinal Muscular Atrophy) community. ourangelmaggie.blogspot.com Please be sure to leave a rating and review of the podcast. We love the feedback! And share it with your friends!

Nine years ago, when 6 week-old Corey was admitted to the hospital for generalized weakness, everyone assumed that he had some sort of infection. His mother, Stephanie, thought that he would get some medication, maybe some IV fluids and then she would be able to take her little boy home again. On the third day of his hospitalization, however, Stephanie overheard a few residents talking. She heard the use the term, 'SMA' for the first time. A young doctor started a sentence with the words, 'if he lives to 6 months' and 'if he lives to a year.'  Suddenly, Stephanie's life was turned up-side-down. Corey did indeed have SMA (Spinal Muscular Atrophy) and he actually did not live to see 6 months. When Corey was born, a diagnosis of SMA was a death sentence. Only months after Corey was born, clinical trials for a treatment for SMA were developed. Now, that medication is so successful in treating SMA that we are really nearing the day that these children will live with SMA and not die from it. Since Corey's death, Stephanie has done so much to support this cause. She was instrumental in getting SMA testing on the newborn screen in the state of Ohio. She speaks to groups nationally as well. I know that after losing a child, I want to do anything that I can to prevent another parent from feeling my same pain. Stephanie feels the same way and her work has truly helped prevent some many deaths. Today, we talk about her work in the Cure SMA organization, but we also discuss her personal grief journey as well. Stephanie talks about the pain of returning home without her baby boy in her arms. We discuss learning to help her then 5 year old daughter grieve in an open, honest way and the pain that comes with watching our children grieve. Now, so many years later, there are fewer and fewer people who remember baby Corey, and that makes some days even harder than in the beginning. It certainly make those who remember and understand the lasting pain all the more precious.

On this week's Tech Nation, Moira speaks with Dr. Levi Garraway, the Chief Medical Officer of Genentech about FDA approvals for treatments in two very rare diseases - SMA - Spinal Muscular Atrophy, and NMOSD - Neuromyelitis Optica Spectrum Disorder. Then Dr. Thomas Rando, Co-Founder of Fountain Therapeutics, a Professor at Stanford University School of Medicine, and Director of Glen Laboratories on the Biology of Aging talks about a rampant medical condition – aging.

On this week's Tech Nation, Moira speaks with Dr. Levi Garraway, the Chief Medical Officer of Genentech about FDA approvals for treatments in two very rare diseases - SMA - Spinal Muscular Atrophy, and NMOSD - Neuromyelitis Optica Spectrum Disorder. Then Dr. Thomas Rando, Co-Founder of Fountain Therapeutics, a Professor at Stanford University School of Medicine, and Director of Glen Laboratories on the Biology of Aging talks about a rampant medical condition – aging.

Spinal Muscular Atrophy, or SMA, is a genetic disorder where nerve cells in the spinal cord die prematurely, and this causes the muscles that would normally be controlled by those nerves to atrophy. The most common subtype usually presents in the first 6 months of life with a hypotonic baby (and other lower motor neuron signs). Typically these children die before 2 years of age, mostly from respiratory failure. There are some new treatments being developed including one currently available on the PBS in Australia (nusinersen) that are dramatically altering disease course in some children. Links and resources: Follow us on Instagram @yourekiddingrightdoctors Facebook: https://www.facebook.com/yourekiddingrightpod-107273607638323/ Our email is yourekiddingrightpod@gmail.com Make sure you hit SUBSCRIBE/FOLLOW so you don't miss out on any pearls of wisdom and RATE if you can to help other people find us! (This isn't individual medical advice, please use your own clinical judgement and local guidelines when caring for your patients)

Parenting a child that has a disability had its challenges pre-COVID [19] , but parenting the same child during a pandemic is a whole other ball game. We spent some time talking to Lana, mom of an adorable little boy with SMA (Spinal Muscular Atrophy). Lana talks us through what SMA is, how  her son has been affected, how the COVID-19 pandemic has impacted their family, and what measures they take to protect Kaysen who is immunocompromised due to SMA. Listen to Lana give us the real  insight into parenting a child with a disability during a pandemic. Is your life impacted by an immunodeficiency? Do you have a loved one you need to take extra special care of during this pandemic? Share your story on our Instagram: https://www.instagram.com/momlifethepodcast/

Parenting a child that has a disability had its challenges pre-COVID [19] , but parenting the same child during a pandemic is a whole other ball game. We spent some time talking to Lana, mom of an adorable little boy with SMA (Spinal Muscular Atrophy). Lana talks us through what SMA is, how  her son has been affected, how the COVID-19 pandemic has impacted their family, and what measures they take to protect Kaysen who is immunocompromised due to SMA. Listen to Lana give us the real  insight into parenting a child with a disability during a pandemic. Is your life impacted by an immunodeficiency? Do you have a loved one you need to take extra special care of during this pandemic? Share your story on our Instagram: https://www.instagram.com/momlifethepodcast/

In this Not Network podcast episode Matthew and Jimmy talk to a man that creates elegant minimalistic looping motion design work that's pierced the reddit and NFT sphere. His name is ARC4G. However, ARC hasn't had the easiest journey in the 3D world. ARC has a very rare disease called SMA (Spinal Muscular Atrophy) a neuromuscular disorder that causes muscle weakening and wasting. Despite the hurdles he's jumped through ARC prevails and ends up on top of the world creating fantastic designs! This is a unique podcast we did because ARC doesn't speak or use his voice at all in this podcast episode because of SMA it's a challenge to talk. So with the help of a discord chat we had a wonderful conversation and really got to know who ARC4G really is. Matthew and Jimmy really had a great time and we hope that whoever is listening will also enjoy the nice little chat we had. With all that to say, enjoy! Show Notes: --- Send in a voice message: https://podcasters.spotify.com/pod/show/not-network/message Support this podcast: https://podcasters.spotify.com/pod/show/not-network/support

Interview With Jermia White talking About her life with (SMA) Spinal Muscular Atrophy. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/sean-erin-babcock/support

On this week's Tech Nation, Moira speaks with Dr. Levi Garraway, the Chief Medical Officer of Genentech about FDA approvals for treatments in two very rare diseases - SMA - Spinal Muscular Atrophy, and NMOSD - Neuromyelitis Optica Spectrum Disorder. Then Dr. Thomas Rando, Co-Founder of Fountain Therapeutics, a Professor at Stanford University School of Medicine, and Director of Glen Laboratories on the Biology of Aging talks about a rampant medical condition – aging.

On this week’s Tech Nation, Moira speaks with Dr. Levi Garraway, the Chief Medical Officer of Genentech about FDA approvals for treatments in two very rare diseases - SMA - Spinal Muscular Atrophy, and NMOSD - Neuromyelitis Optica Spectrum Disorder. Then Dr. Thomas Rando, Co-Founder of Fountain Therapeutics, a Professor at Stanford University School of Medicine, and Director of Glen Laboratories on the Biology of Aging talks about a rampant medical condition – aging.

Jessica ditched her corporate gig and the 9 -5 grind to live her most authentic, bold, joyful life. Her purpose is to share her testimony to encourage others to get unstuck and really start living. It took her losing her son to get to this spot in her life. Jessica and her Husband lost their son, Lewiston, 179 days after he was born due to a rare genetic disease called SMA (Spinal Muscular Atrophy). This life changing incident inspired Jessica to establish The Love for Lewiston Foundation and The Lewiston Label in an effort to find a cure and get new born screening into place so that no family has to endure what they did with their son Lewiston. So far Jessica has raised more than $800,000 through the foundation and continues to work towards her goals against SMA. She is also an author having published her recent book, Bring the Joy.Jessica says that her on any given day, her activities range from: mopping up another mess and cleaning the kitchen for the millionth time, dreaming up her next design for the clothing line, fighting and lobbying to find a cure and get treatment for those that suffer with SMA or writing a chapter for her book. Her Energy in the Podcast is truly amazing and her ability to bring the joy in her life and to others going through difficult times is inspirational.

Jessica ditched her corporate gig and the 9 -5 grind to live her most authentic, bold, joyful life. Her purpose is to share her testimony to encourage others to get unstuck and really start living. It took her losing her son to get to this spot in her life. Jessica and her Husband lost their son, Lewiston, 179 days after he was born due to a rare genetic disease called SMA (Spinal Muscular Atrophy). This life changing incident inspired Jessica to establish The Love for Lewiston Foundation and The Lewiston Label in an effort to find a cure and get new born screening into place so that no family has to endure what they did with their son Lewiston. So far Jessica has raised more than $800,000 through the foundation and continues to work towards her goals against SMA. She is also an author having published her recent book, Bring the Joy.Jessica says that her on any given day, her activities range from: mopping up another mess and cleaning the kitchen for the millionth time, dreaming up her next design for the clothing line, fighting and lobbying to find a cure and get treatment for those that suffer with SMA or writing a chapter for her book. Her Energy in the Podcast is truly amazing and her ability to bring the joy in her life and to others going through difficult times is inspirational.

Eddie's Podcast – Episode 8 with Special Guest, AJ BrockmanFounder/President:Brewhouse Gallery: https://www.facebook.com/TheBrewhouseGallery/The Kelsey Theater: https://www.thekelseytheater.com/Kelsey City Brewery: https://www.kelseycitybrewing.com/AJ Brockman is a local digital artist. Wheelchair-bound since age 2, Brockman has SMA (Spinal Muscular Atrophy), a progressive neuromuscular disease. He views himself as being “differently abled” rather than “disabled” and lives life to the fullest every day. He began painting a child developed his own impressionistic style and started to see the world differently from that point on, using surroundings as inspiration and appreciating the little things in life.Following his passion for art become challenging when he lost the strength of his hands and the ability to create. He transitioned into pursuing a career in television production or radio broadcasting, as his voice was unaffected. However, while at Palm Beach Gardens High School, he discovered an elective course called “Commercial Art Technology.” With the aid of computer software that replicates traditional painting, typesetting, layout and with the use of two fingers on his left hand, he is able to manipulate a mouse and have no limitations due to his disability. Brockman graduated with a BFA from Digital Media Arts College. He was awarded the Distinguished Artist Award after graduating at the top of his class. Brockman has won multiple Addy Awards. His technique is a hybrid of Impressionism and Realism. All his works are unique composition, although photography is referenced for correct proportions. It is an extremely time-consuming process that requires hours of research on the subject matter before the canvas is opened. He is the principle at Single Handed Studio where his artwork takes on a wide range of subject matter. As a South Florida native, much of his work reflects the ocean, landscapes, and a beachside lifestyle, although his work runs the gamut and is not limited to a specific genre including influential athletes and musicians, historical events and satire statement pieces. Each piece creates a story with the goal to bring the viewer into the subject matter to experience it firsthand.Digital Artist:https://www.singlehandedstudio.com/'To Subscribe to Podcast: EddiePodcast.comMore on Eddie Stephens: www.EddieStephens.com

Al Freedman“We’re lucky to have our kids to however long we have them, and that’s how I feel about my son… think about what our kids can do.” - Dr. Al FreedmanHaving a support system from friends and families for our people who are diagnosed with SMA is the most wonderful way we can build a better community for them.We are joined by Dr. Al Freedman who is a psychologist by profession and a loving father to his son, Jack, who has SMA.Listen in to our discussion about the following topics:Dr. Freedman’s inspiring story about his son, Jack (0:54/ 3:41)What advice we can share to families with children diagnosed with SMA (1:30)Global SMA conference by Cure SMA (3:30)The SMA Community and Support Groups (5:02)Upcoming SMA conference with Dr. Freedman in Australia (5:49)Peer-to-peer discussions between kids with SMA (6:55)Stigma around SMA (Spinal Muscular Atrophy) (8:08)Parenting advice from Dr. Freedman (8:56)And there are more discussions at the end of this episode!Know more about Dr. Al Freedman at http://www.drfreedman.com/Cure SMA - http://www.curesma.org/Call us (03) 9796 5744Email us at reception@smaaustralia.org.auVisit our website at http://www.smaaustralia.org.auFacebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

This episode of the podcast is all about the positivity to come out of Comic-Con's 50th Anniversary. Starting with a company called Magic Wheelchair. A company started by a father of 5 who's first born was diagnosed with (SMA) Spinal Muscular Atrophy at 9 months old. In 2008 he was inspired to create a costumed designed around his son's wheel chair after asking his son what he wanted to be for Halloween. His son said a pirate and that's where the company took off, designing wheelchairs for families free of charge and bringing attention as well as making a kid feel a little bit more normal about their disease. Our main story is about Edgardo Miranda-Rodriguez, the owner and creator of the "La Borinqueña" comic. With a young comic starting in 2016 already an iconic figure for Puerto Rico, Edgardo was given the humanitarian award for using his platform to combat injustices done to the Puerto Rican people as well as bring attention to the conditions the island is in, especially after the tragedy of hurricane Maria. Edgardo teamed up with DC comics only after 2 years to help bring more awareness to rebuilding Puerto Rico with his comic "Ricanstruction", where La Borinqueña is joined with iconic DC heroes like Superman and Wonder Woman who help rebuild the Island that Puerto Ricans love so much. If you would like to donate or get involved with any of these projects follow the links provided and see how you can help out. Useful Links:www.magicwheelchair.orgwww.La-Borinquena.comThis July 27th Peace and Play Day: The Block Gives Back! check out the link for more information and see how you can get involved. Facebook: The Block Gives Back Instagram: theblockgivesbackWebsite: www.TheBlockGivesBack.orgBe on the look out for "Babes Who Brunch" women's empowerment mixer. September 15th, 2019. visit the website for more information on how you can get involved.website: https://www.thequeencorner.comInstagram: @queencorner_Facebook: The Queen CornerFor more questions on the podcast, how you can contribute, or how to reach me you can follow and contact me via:Email: LimelightHighlight@gmail.comInstagram: LimelighthighlightTwitter: @LLHighlightFacebook: https://www.facebook.com/limelighthighlight/And if there is anyone you'd like to see featured on the podcast or you have any inputs on what should be on the show feel free to contact me via the links above. If you or anyone you know has done something positive be sure to write in for a shoutout and help positivity spread throughout the world. Until next time, "Be humble, be helpful, pay it forward and be the best you! Spread that love!"

This episode of the podcast is all about the positivity to come out of Comic-Con's 50th Anniversary. Starting with a company called Magic Wheelchair. A company started by a father of 5 who's first born was diagnosed with (SMA) Spinal Muscular Atrophy at 9 months old. In 2008 he was inspired to create a costumed designed around his son's wheel chair after asking his son what he wanted to be for Halloween. His son said a pirate and that's where the company took off, designing wheelchairs for families free of charge and bringing attention as well as making a kid feel a little bit more normal about their disease. Our main story is about Edgardo Miranda-Rodriguez, the owner and creator of the "La Borinqueña" comic. With a young comic starting in 2016 already an iconic figure for Puerto Rico, Edgardo was given the humanitarian award for using his platform to combat injustices done to the Puerto Rican people as well as bring attention to the conditions the island is in, especially after the tragedy of hurricane Maria. Edgardo teamed up with DC comics only after 2 years to help bring more awareness to rebuilding Puerto Rico with his comic "Ricanstruction", where La Borinqueña is joined with iconic DC heroes like Superman and Wonder Woman who help rebuild the Island that Puerto Ricans love so much. If you would like to donate or get involved with any of these projects follow the links provided and see how you can help out. Useful Links:www.magicwheelchair.orgwww.La-Borinquena.comThis July 27th Peace and Play Day: The Block Gives Back! check out the link for more information and see how you can get involved. Facebook: The Block Gives Back Instagram: theblockgivesbackWebsite: www.TheBlockGivesBack.orgBe on the look out for "Babes Who Brunch" women's empowerment mixer. September 15th, 2019. visit the website for more information on how you can get involved.website: https://www.thequeencorner.comInstagram: @queencorner_Facebook: The Queen CornerFor more questions on the podcast, how you can contribute, or how to reach me you can follow and contact me via:Email: LimelightHighlight@gmail.comInstagram: LimelighthighlightTwitter: @LLHighlightFacebook: https://www.facebook.com/limelighthighlight/And if there is anyone you'd like to see featured on the podcast or you have any inputs on what should be on the show feel free to contact me via the links above. If you or anyone you know has done something positive be sure to write in for a shoutout and help positivity spread throughout the world. Until next time, "Be humble, be helpful, pay it forward and be the best you! Spread that love!"

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

Jessica Jansen, founder of Love for Lewiston Foundation - A charitable foundation dedicated to raising awareness of SMA - Spinal Muscular Atrophy. Her message of Hope, Motivation, and Inspiration through spiritual growth and courage makes an amazing and humbling conversation. Her message of CHANGE to the world - get off your asses and do something about it.

Margaret Wallis-Duffy from WOW Living TV welcomed Theresa Van Fraasen, Fundraising Coordinator at Families of SMA Canada and Jennifer Jahnke, parent of a great little guy with SMA (Spinal Muscular Atrophy) into the Listen UP studios to chat about what SMA is, who it affects, and how close to a cure they are! Some amazing charitable initiatives are happening soon, including a gorgeous semi-precious stone bracelet from Loftan with 20% of the proceeds going to SMA research!