Fatigue Experienced Prior Spinraza Injection & Cure SMA COVID-19 Care Package
Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection. DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza during the coronavirus is available for listening. Are you ...
6m May 20, 2020
6m
#58 - How COVID-19 Affects Spinraza and Other Medical Appointments
In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Hosts Kevin Schaefer and Michael Morale, and forum moderators DeAnn Runge and Alyssa Silva, each share their personal experiences regarding this subject. They also discuss how telemedicine could potentially become the new normal for rare disease pat...
30m May 19, 2020
30m
How Lung Ultrasound is a Reliable Option to Chest X-rays for Monitoring Children
Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns. SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung ultrasound is a reliable option to chest X-rays for monitoring children. Are you interested in learning more about spinal muscular atrophy? If so, please v...
9m May 18, 2020
9m
Study Suggests The Interplay of Motor Neurons and Glial Cells is At The Root of SMA
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?” SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study suggests the interplay of motor neurons and Glial cells is at the root of Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewst...
8m May 15, 2020
8m
Differences Between Risdiplam and SRK-015, Dealing With Anxiety & Taking Things For Granted
In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a topic of conversation. Brianna Albers' series on dealing with anxiety that comes along with the coronavirus has been a popular topic as well as discussions about what “able-bodied” people take for granted, liquid albuterol and disabled authors. Foru...
6m May 13, 2020
6m
How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data
How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data by SMA News Today
12m May 11, 2020
12m
How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery
Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion surgery. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m May 08, 2020
7m
How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy
Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book discussion. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
6m May 06, 2020
6m
#57 - Interview with Heather Kerstetter
In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
27m May 05, 2020
27m
How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA
Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward. SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular disorders. Are you interested in learning more about spinal musc...
8m May 04, 2020
8m
Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2
SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2. SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit htt...
7m May 01, 2020
7m
Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders
Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift. Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital preparedness folders. Are you interested in learning more about spinal...
6m Apr 29, 2020
6m
Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial
While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Apr 27, 2020
9m
First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza
Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift. SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Apr 24, 2020
6m
Playing Phone Games and Nintendo Switch & Home Exercise Routines and Robotic Assistance Devices
Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability. Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic assistance devices have also been topics of conversation. Are ...
6m Apr 22, 2020
6m
#56 - SMA Treatments Overview and “Crip Camp” Discussion
In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam. Then in part two, special guest Ralph Yaniz joins Kevin and Michael to discuss the new Netflix documentary “Crip Camp.” Ralph is a columnist for Muscular Dystrophy News Today, and a disability rights activist. Listen to the...
50m Apr 21, 2020
50m
How Adult Patients with SMA Benefit From Spinraza Treatments
To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons. SMA News Today’s multimedia associate, Price Wooldridge, discusses how adult patients with Spinal Muscular Atrophy benefit from Spinraza treatments. Are you interested in learning more about spinal muscular atrophy? If so...
9m Apr 20, 2020
9m
Ideas for Staying Fit and Healthy During Isolation & Approval of Zolgensma for Treating SMA in Japan
Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation. SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma for treatment of Spinal Muscular Atrophy in Japan. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5m Apr 17, 2020
5m
Accessible Toys, Having Fun With Subscription Boxes & Kevin Schaefer's Obsession With Action Figures
The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. Also don’t forget to check out DeAnn’s latest vlog on having fun with subscription boxes. Forums Director Kevin Schaefer talks about how his lifelong obsession with action figures contributes to hi...
7m Apr 15, 2020
7m
Odd Jobs, Spring Cleaning & French Study Finds Improvements in Palliative Care for SMA Type 1 Babies
Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning. SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliative care for SMA Type 1 babies has improved. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Apr 13, 2020
7m
FDA Shifts Risdiplam Decision to August to Include Data on Older Patients
Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA shifting it’s Risdiplam decision to August to include data on older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday...
9m Apr 10, 2020
9m
Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19
COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more. Also, forums Director Kevin Schaefer reviews the new Netflix documentary “Crip Camp,” which tells the story of the early disability rights movement.
6m Apr 08, 2020
6m
#55 - Interview With Victor Guerra
In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. During this discussion, he talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life. Victor’s website: www.victortheinspiration.com Vi...
52m Apr 07, 2020
52m
How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss
Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments. SMA News Today’s multimedia associate, Price Wooldridge, discusses how scoliosis surgery in SMA children is linked to permanent motor skill loss. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smane...
7m Apr 06, 2020
7m
Discussing Markers of Inflammation Essential for AAV Gene Therapy Use & Thoughts About “Crip Camp"
Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities. SMA News Today’s multimedia associate, Price Wooldridge, discusses markers of inflammation essential for AAV gene therapy use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://sman...
6m Apr 03, 2020
6m
The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times. Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now compares. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Apr 01, 2020
6m
Global Rare Disease Group’s Goal to Have 1,000 New Therapies by 2027 & Benefits of a Service Dog
Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life. SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s goal to have 1,000 new therapies by 2027, despite the current COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Mar 30, 2020
8m
Book, Movie and Spotify Recommendations & Study Recommends a Lower Radiation Dose for Spinraza Scans
Forums Director Kevin Schaefer shares some book, movie, and Spotify recommendations for people who are on quarantine. SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which recommends a lower radiation dose for Spinraza scans. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Mar 27, 2020
8m
Alternative Solutions to Physical Therapy During the COVID-19 Pandemic
Forums Director Kevin Schaefer talks about alternative solutions to physical therapy. As a result of the COVID-19 pandemic, he has to refrain from going to his appointments for now. Also, believe it or not, despite being high on the list, the coronavirus isn’t the only topic of conversation on the forums. DeAnn is in need of a recommendation for a cell phone and Alyssa is wondering what made yo...
5m Mar 25, 2020
5m
New Test Screens 420 Genes for Markers of SMA & A Message to Friends, Family About COVID-19
Forums moderator DeAnn Runge shares her message to friends and family in regards to COVID-19 and their lives being turned upside down. SMA News Today’s multimedia associate, Price Wooldridge, discusses a new test which screens 420 genes for markers of Spinal Muscular Atrophy and other diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanew...
5m Mar 23, 2020
5m
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/
7m Mar 20, 2020
7m
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...
5m Mar 18, 2020
5m
#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?
19m Mar 17, 2020
19m
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/
7m Mar 16, 2020
7m
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 f...
5m Mar 13, 2020
5m
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.
5m Mar 11, 2020
5m
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 a...
6m Mar 09, 2020
6m
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://sm...
7m Mar 06, 2020
7m
Celebrating Rare Disease Day 2020 with #WhatMakesMeRareSMA & How Music Plays a Big Part in Life
February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness to rare diseases and celebrating #WhatMakesMeRareSMA. Also, forums Director Kevin Schaefer shares how music plays a big part in his life in his latest column.
7m Mar 04, 2020
7m
#53 - Interview with Alyssa Silva
In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the founder of the nonprofit organization Working on Walking. Throughout this conversation, she talks about growing up with SMA Type 1, her college experiences, writing, and more. Are you interested in le...
44m Mar 03, 2020
44m
Public Interactions with People With Disabilities & Muscular Dystrophy Association Helping Others
When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic. Also, listen to SMA News Today’s multimedia associate, Price Wooldridge, discuss how the Muscular Dystrophy Association leads in helping others with care centers, research, and a summer camp. Are you interested in learning more ...
8m Mar 02, 2020
8m
Risdiplam Success in Treating SMA Type 1 Babies in FIREFISH Study & Kevin's Spinraza Injection
Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 babies in the FIREFISH study. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Feb 28, 2020
6m
Talking About Rare Disease Day & Accessible Parking, Sleepovers with SMA and Product Reviews
Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him. Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics being discussed are accessible parking, sleepovers and product reviews.
6m Feb 26, 2020
6m
The Discovery of a Potential New SMA Genetic Modifier & Having a Great Deal of Strength
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook. SMA News Today’s multimedia associate, Price Wooldridge, discusses the discovery of a potential new SMA genetic modifier. Are you interested in learning more about spinal muscular atrophy? If so, please vi...
9m Feb 24, 2020
9m
How a CSF Protein Profile May Help Predict Spinraza Responses in Late-Onset SMA Patients
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile may help predict Spinraza responses in late-onset SMA patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Feb 21, 2020
7m
Kevin Schaefer Reads His Week’s Motivational Post & Katie Napiwocki's Comeback as a Columnist
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists! In her latest column, Peering Through the Fog of Fear, she explains why she took a break from writing about SMA and how she came to the decision to stop her Spinraza treatments.
5m Feb 19, 2020
5m
52 - Luisa Palazola and Rare Disease Day 2020
In episode 52, Kevin Schaefer talks with his coworker Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day.
40m Feb 18, 2020
40m
How Magnetic Rods May Help Scoliosis in Children with SMA & Living With Caution, Not Fear
Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how magnetic rods may be an alternative treatment to correct scoliosis in children with SMA. Are you interested in learning more about spinal muscular atrophy? If so, ...
7m Feb 17, 2020
7m
Early Access Program From Roche for SMA Therapy Risdiplam in Europe
SMA News Today’s multimedia associate, Price Wooldridge, discusses an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming friendships with his caregivers, and why he thinks this is important. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5m Feb 14, 2020
5m
Accessible Travel, Becoming Friends With Your Caregivers and The Importance of Exercise With SMA
Some recent topics being discussed on the forums include accessible travel and becoming friends with your caregivers. Also, Dose of DeAnn has a new episode where she collaborates with a community member to talk about the importance of exercise, and forums Director Kevin Schaefer talks about his time working for his college student newspaper. Are you interested in learning more about spinal musc...
6m Feb 12, 2020
6m