#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

Jaksot(440)

Tips For Self-Isolation During the Coronavirus & SYT13 Gene Can Prolong Life in Mice With SMA

Tips For Self-Isolation During the Coronavirus & SYT13 Gene Can Prolong Life in Mice With SMA

Forums Director Kevin Schaefer shares some of his tips for self-isolation during the Coronavirus (COVID-19) outbreak. SMA News Today’s multimedia associate, Price Wooldridge, discusses how the synaptotagmin 13 (SYT13) gene can prolong life in mice with ALS and SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

20 Maalis 20206min

Coronavirus (COVID-19): Precautions, Protecting Yourself and Staying Productive During Lockdown

Coronavirus (COVID-19): Precautions, Protecting Yourself and Staying Productive During Lockdown

One of the main topics of conversation over on the forums is COVID-19. Posted are links to resources and tips on staying productive during lockdown. DeAnn also discusses where to find the latest SMA News Today columns. Also, forums Director Kevin Schaefer shares his thoughts on staying cautious during the Coronavirus pandemic, and how he’s protecting himself. Are you interested in learning more about spinal muscular atrophy? If so, please visit www.smanewstoday.com/

18 Maalis 20205min

#54 - Roundtable About Corona Virus

#54 - Roundtable About Corona Virus

In episode 54, Michael and I discuss the global outbreak of Coronavirus (COVID-19). We share our tips for how others in the SMA community can best protect themselves, as well as their caregivers. Please note that this is not professional medical advice. We’re just sharing our thoughts and opinions. How are you all doing? Any tips for self-isolation?

17 Maalis 202018min

Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA

Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA

Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review. SMA News Today’s multimedia associate, Price Wooldridge, discusses how the lack of SMA protein may also directly contribute to SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

16 Maalis 20207min

Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework

Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework

SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct some problems that have already occurred. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Institute for Gene Therapies seeks to modernize the regulatory reimbursement framework. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

13 Maalis 20205min

COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap

COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap

In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SPC’s and being spontaneous.

11 Maalis 20205min

Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA

Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA

Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous. SMA News Today’s multimedia associate, Price Wooldridge, discusses how body composition may be a biomarker of motor function in SMA patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

9 Maalis 20206min

Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies

Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies

Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, details an MDA executive’s discussion of gene therapies, SMN2 gene modifiers, and the challenges in treating SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

6 Maalis 20206min

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