#122: A Conversation With Rare Disease Advocates

#122: A Conversation With Rare Disease Advocates

In episode 122, host Kevin Schaefer talks with three of his coworkers from BioNews Inc., the parent company of SMA News Today. Brittany Foster is BioNews’ HR Coordinator, and she lives with pulmonary hypertension. Brad Dell is the Director of Community Content, and he lives with cystic fibrosis. Matt Lafleur is the Culture Coordinator, and he lives with Friedreich’s ataxia. In anticipation of Rare Disease Day 2023, these advocates share their experiences, pitfalls, and triumphs living with their respective conditions. ================================ Brittany’s column: https://pulmonaryhypertensionnews.com/recharged-and-rewired-brittany-foster/ Brad’s column: https://cysticfibrosisnewstoday.com/victorious-brad-dell/ Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

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SMA Type 1 Infants Treated With Zolgensma Achieving Milestones, Data Show

SMA Type 1 Infants Treated With Zolgensma Achieving Milestones, Data Show

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

16 Okt 20207min

Spontaneous Trips, Reading, Socially Distant Celebrations, Delayed Deliveries & More

Spontaneous Trips, Reading, Socially Distant Celebrations, Delayed Deliveries & More

Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it. A variety of topics are being discussed in the forums. Among them include enjoying reading, socially distant celebrations, maskne and delayed deliveries. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

14 Okt 20207min

Infants Receiving Evrysdi Continue to Improve and Achieve Motor Milestones

Infants Receiving Evrysdi Continue to Improve and Achieve Motor Milestones

SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data. In light of National Disability Employment Awareness Month (NDEAM) DeAnn Runge shares her first job experiences and why it’s important to talk about this topic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

12 Okt 20209min

Novartis to Open, at FDA Request, New Trial of Zolgensma for Older Patients

Novartis to Open, at FDA Request, New Trial of Zolgensma for Older Patients

SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

9 Okt 20207min

How SMA Affects Your Ability to Draw, Treasuring Little Things & Setting Boundaries With Caregivers

How SMA Affects Your Ability to Draw, Treasuring Little Things & Setting Boundaries With Caregivers

Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things. Recent topics being discussed in the SMA News Today forums include setting boundaries with caregivers, vlogs from DeAnn Runge & Michael Morale as well as reflecting on the changing season. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

7 Okt 20205min

#67 - Interview With Maylan Chavez

#67 - Interview With Maylan Chavez

In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabilities. During this interview, Maylan shares her experiences as an adult with SMA Type 2, and offers some advice for others in the community. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

6 Okt 202037min

Spinraza Leads To Motor Gains Over Time in SMA Type 3 Adults

Spinraza Leads To Motor Gains Over Time in SMA Type 3 Adults

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study. DeAnn Runge talks about meeting her new service dog and what training is like. She also discusses the different types of dog placements that were in her class. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

5 Okt 20209min

GridPad Trilogy Communication Device Aids People With Speech And Motor Disorders Who Have SMA

GridPad Trilogy Communication Device Aids People With Speech And Motor Disorders Who Have SMA

SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

2 Okt 20204min

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