All Episodes

#160: A conversation with muscular dystrophy columnist and advocate Patrick Moeschen

#159: Emily Figueroa - Social Media Manager and Adult with SMA

#158: Alberto Lopez -A single father talks about raising his daughter with SMA

#157: Delphine Andrews - Life coach and disability advocate with SMA

#156: Maylan Chavez and Sory Rivera: Friends and podcast hosts with SMA

#155: Jasmine Jackson, digital creator and mother with SMA

#154: Coach Damon Vincent, adaptive fitness specialist

#153: Annie Heathcote, Entrepreneur and Speaker with SMA

#152: Kamil Goungor, Disability activist

#151: Anton Paras, marketing executive in digital health

#150: Jenna and Tanya Vega share their love story

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

#147: Brandi Lewis, rare disease advocate and speaker

#146: TJ Wall, graduate student with SMA

#145: Carrie Manriquez, Mother of adult son with SMA

#144: Doug McCullough, Advocate and Author With SMA

#143: Cory Lee, Travel Blogger and Influencer With SMA

#142: Savannah and Will Huff, Interabled Couple

#141: Quinn Bucher, Theater Student With SMA

#140: Lucy Trevino, Academic and Advocate

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

#138: Nolan and Blake Shofner, Brother Entrepreneurs

#137: Jared Wayland: Graphic Designer and Music Connoisseur

#136: Shaniqua Granby Discusses Identity and Community

#135: Ryan Kinnear, Fisherman and Hunter With SMA

#134: Dr. Edward Smith, Neurologist and SMA Specialist

#133: Rebecca Mulhall, Parent of Twins With SMA

#132: Collin Pollock, Business Owner With SMA

#131: Candis Welch, Disability Advocate and Ms. Wheelchair California

#130: Andrew Cherico, College Student With SMA

#129: Rylie Erbacher, Rare Artist With SMA

#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate

#127: Kevan Chandler, author, traveler, and nonprofit founder

#126: Janelle Fiesta and Antoine Vuong, interabled couple

#125: Brooklyn Nichols, child author with SMA, and her mother, Keanna

#124: A conversation with an interabled couple, Steve and Brittany Bingman

#123: A Conversation With LaMondre Pough and Gabrielle Runyon, Two Black Disability Advocates

#122: A Conversation With Rare Disease Advocates

#121: Pidgie, Singer and Songwriter With SMA

#120: Dom Evans, Activist and Filmmaker

#119: Chaz Hayden Discusses His Debut Novel

#117: Delphine Andrews and Kevin Davis, Interabled Couple

#118: Aging and SMA

#116: Shaniqua Granby, Law Professional With SMA

#115: Jose Flores, Author and Motivational Speaker

#114: Daniele Johnson, SMA Mom and Advocate

#113: Dustin Swafford, Power Soccer Coach and Player

#112: Lexi Villa, Social Media Influencer and Disability Advocate

#111: Steven Verdile, Graphic Designer and Disabled Creative

#110: Author Ben Mattlin Discusses Disability Pride Month

#109: 2022 Cure SMA Conference Recap

#108: A Mother Discusses the Approval of Evrysdi for Infants With SMA

#107: A Conversation About Mental Health With LGBTQ+ and Disability Advocates

#106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates

#105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates

#104: Interview With Ben Lou, Mathematics Student With SMA

#103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

#102: Interview with Amber-Joi Watkins, SMA Mom and Advocate

Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays

#101: Interview with John Milligan, Asuragen Scientist & SMA Testing Expert

SMA Screening Now Available to 87% of Newborns in US & Olympics Lacked Disability Representation

Evrysdi for Infants Under 2 Months Old Given FDA Priority Review & Adapting to a New Wheelchair

#100: Interview with Gabrielle Runyon, College Student with SMA and Disability Advocate

#99: SMA and Motherhood

Spine Surgery Effective in SMA Type 1 Children & Mentally Preparing For Surgery

Wheelchair Hockey Linked to Physical, Psychological Gains & Preserving Privacy When Living with SMA

Scholar Rock Shares Design of Phase 3 Trial Testing of Apitegromab & Staying Organized With SMA

#98: How to Manage Caregivers, a Chat with SMA Contributors DeAnn Runge and Michael Morale

Spinraza May Restore Development of Motor Neurons & Why Finding Reliable SMA Carers Is Not Easy

Son With SMA Inspires Character on ‘Ordinary Joe’ TV Show & How SMA Can Shape Creativity

Evrysdi May Be Available in Early 2022 to Eligible UK Patients &Modifying a Wheelchair for SMA Needs

Spinraza Improves Hand Dexterity in SMA Type 2 Children & Achieving Ambitions with SMA

#97: Interview with Ali Ramos, a Social Worker and Disability and LGBTQ+ Activist.

Spinraza Delays Do Not Directly Affect Children in Italy & Making Goals with SMA

Saliva Samples May Help Diagnose SMA & Moving Into a New Home with SMA

Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet

Treatment Delays May Be Less Important Than Family Support & Cherishing Togetherness During Holidays

Phase 3 Trial of Apitegromab on Track for This Year & Managing Technological Issues With SMA

Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi

#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye

Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA

Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA

Oral SMA Therapy Is Ideal and Aids Motor Skills and Breathing & Why No Changes in SMA is Good

#93: Interview With Garrett Lerner, Co-creator and Executive Producer of NBC Series “Ordinary Joe”

Phase 3 Apitegromab Trial Planned for Non-ambulatory Types 2 And 3 & Latest Topics on Our Forums

Neurofilament Blood Levels Likely to Predict Treatment Response in SMA

Quality of Life Survey Aims to Help Inform SMA Community Needs & Situations That Could’ve Gone Wrong

#92: Discussing Disability and Employment

Pre-symptomatic Infants Retain Swallowing Ability in Evrysdi Trial

Spinraza RESPOND Trial Enrolling Children Not Helped by Zolgensma

Low Bone Density Puts SMA Children in China at Risk for Fractures & DeAnn Runge's Favorite Hobbies

Certain Abilities Decline in SMA Children Unable to Walk & Gaming to Find Accessibility

#91: Interview with Blake Watson, Web Designer and Developer

Trial of Spinraza at High Dose for Patients Who Have Used Evrysdi & Dealing With Your Period

Blood NfL Levels May Mark SMA Severity, Therapy Efficacy in Very Young

Variant in Androgen Receptor Might Be Useful in Treating SBMA

Cure SMA And Cytokinetics Renew Joint Efforts to Raise Funds and Awareness

#90: Interview With Judy Heumann, Disability Rights Activist

SMA Caused by Mutation in ASAH1 Gene Reported in Romania