Newborn Screening in Massachusetts Seen as Highly Accurate And Effective
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Massachusetts being seen as highly accurate and effective. Forums Director Kevin Schaefer reads a column by Ari Anderson about stepping outside his comfort zone to ask for extra help. Link to Ari’s column: https://smanewstoday.com/columns/2021/06/24/asking-for-help-new-hig...
10m Jun 30, 2021
10m
Spinraza Leads to Better Swallowing, Farther Walking & Weekly Wins: Sharing Wins in Our Forums
SMA News Today’s multimedia associate, Price Wooldridge, discusses children with Spinal Muscular Atrophy (SMA) taking Spinraza, leanding to better swallowing and farther walking. Also, not only are the forums a great place to learn, they’re a fabulous place to share where members can really relate to each other in a unique way. New categories have been added that emphasize that fact. Weekly Wi...
8m Jun 28, 2021
8m
Apitegromab Safely Increases Motor Abilities in SMA Types 2, 3
SMA News Today’s multimedia associate, Price Wooldridge, discusses meaningful improvements in motor abilities evident with apitegromab treatment in later-onset Spinal Muscular Atrophy (SMA) patients. Also, DeAnn Runge shares her adventure picking honeyberries and the challenges she faced. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstod...
8m Jun 25, 2021
8m
Evrysdi Linked to Improved Motor Function in 2 Trials & Finding Community Support
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about finding community support through this year’s Cure SMA virtual conference. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-ali...
11m Jun 23, 2021
11m
SMA Added to North Carolina’s Newborn Screening Program
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina. Also, DeAnn Runge shares, Halsey Blocher’s latest column, “Finding a Bit of Myself in Truman Burbank,” where she draws parallels between her life and the movie The Truman Show. Are you interested in learning more about spinal muscular atrophy? ...
8m Jun 21, 2021
8m
NICE Favors Zolgensma Being Added to England’s Public Health Program
SMA News Today’s multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients. For the second time the Cure SMA conference was held virtually. DeAnn Runge talks about what she gained from the conference. She also talks about her latest YouTube video that shows what’s inside a care package from Cure SMA. Are yo...
7m Jun 18, 2021
7m
Navigating the Past Year Without Caregivers Has Been Challenging
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about the power of saying yes. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jun 16, 2021
8m
#84: Scholar Rock Updates and Community Highlights
In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website. ==========...
48m Jun 15, 2021
48m
NICE Initially Against Adding Evrysdi to UK Public Health System
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System. Also, DeAnn Runge reads Katie Napiwocki’s recent column, “Embracing the Growing Pains of New Wheels.” From the hesitancy to start the process to finding ways to adjust once the transition happens DeAnn can relate to it all. Read Katie's column...
13m Jun 14, 2021
13m
SMA and Sibling Relationships: A Brother’s Perspective & Sticking With Evrysdi
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”. Also, DeAnn Runge talks about how she came to the decision to stick with Evrysdi. It was a difficult decision but she’s happy with her choice. Are you interested in learning more about spinal muscular atrophy? If so, please v...
7m Jun 11, 2021
7m
Asuragen’s Lab Test Can Speed Up Diagnosis of SMA Carriers and Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients. Also, Forums Director Kevin Schaefer reads a column from Alyssa Silva about reflecting on her diagnosis day. You can read Alyssa’s column here: https://smanewstoday.com/columns/2021/04/30/reflecting-diagnosis-day-30-years-later/ Are you interested ...
10m Jun 09, 2021
10m
Stress-induced Protein May Serve as New SMA Biomarker in Infants
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a stress-induced protein may serve as a new Spinal Muscular Atrophy (SMA) biomarker in infants. Also, SMA News today brings a variety of the most up to date content that relates to the SMA community. Between columnists, social media platforms, news and research all aspects of SMA life are covered. To help continue bringing...
9m Jun 07, 2021
9m
Apitegromab, Muscle-directed Therapy for SMA, Put on FDA Fast Track
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab being granted a fast track designation by the U.S. Food and Drug Administration. DeAnn Runge talks about her upcoming appointment with her neurologist to discuss continuing with Evrysdi or switching back to Spinraza. She dreads making the wrong decision. Are you interested in learning more about spinal muscular atr...
6m Jun 04, 2021
6m
SMN2 Copy Number and Rare Variant Influence SMA Severity
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the SMN2 copy number and a rare genetic variant influence the severity of Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about embracing the outdoors and venturing into the unknown. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schae...
11m Jun 02, 2021
11m
#83: Interview with Christine Getman and Scottie Foertmeyer, Couple and Magic Wheelchair Executives
In episode 82, host Kevin Schaefer talks with Christine Getman and Scottie Foertmeyer from Portland, Oregon. Christine and Scottie are partners in life and in business, as they run the nonprofit Magic Wheelchair together. They talk about their relationship, advocacy work, and daily living. ================================ Link to Magic Wheelchair: https://www.magicwheelchair.org/ ===========...
53m Jun 01, 2021
53m
SMA May Carry Higher Risk of Fluid Buildup in The Brain & Reflections on Memorial Day
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy may carry a higher risk of fluid buildup in the brain. Also, DeAnn Runge shares her reflections on Memorial Day by summarizing Brianna Albers recent column, "Naming Disability as a Space of Possibility". She also remembers her little brother who was an SMA warrior. Are you interested in learning mor...
9m May 31, 2021
9m
Apitegromab Safely Counters a Muscle Growth Suppressor in Patients With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Apitegromab safely counters a muscle growth suppressor in patients with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge has mixed feelings on the rebranding of the organization she received her service dog through after they removed the symbol of a wheelchair from their logo. Are you interested in learning more about spin...
9m May 28, 2021
9m
Cure SMA Offers US Patients Free Tools to Boost Their Independence & Managing Fatigue With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses free tools being offered by Cure SMA to boost the independence of Spinal Muscular Atrophy (SMA) patients. Also, Forums Director Kevin Schaefer reads a column about the realities of living with SMA and managing fatigue. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m May 26, 2021
8m
Remembering to Prioritize Mental Health & Self-Esteem, Post Vaccination Plans and More
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “I’m Remembering to Prioritize My Mental Health”. DeAnn Runge talks about the hot topics going on right now in the forums. The SMA version of Would You Rather is quite thought provoking. Another topic posted by one of our forum members regarding self-esteem has had a big response...
6m May 24, 2021
6m
Neurofilaments May Not Be Biomarker for Older Patients & The New CDC Mask Recommendations
SMA News Today’s multimedia associate, Price Wooldridge, discusses how neurofilaments may not be a biomarker for older patients with Spinal Muscular Atrophy (SMA) Type 1. Also, DeAnn Runge discusses the new CDC mask recommendations and her feelings associated with them. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m May 21, 2021
8m
Warning of TMA, Rare Blood Disorder, Added to Zolgensma’s Safety Label & Friendships and SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding thrombotic microangiopathy (TMA) to the list of safety concerns for Zolgensma. Forums Director Kevin Schaefer reads a column by Ari Anderson about opening doors for new friendships and connections. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m May 19, 2021
10m
#82: Interview with Hawken Miller, Journalist with Muscular Dystrophy
In episode 82, host Kevin Schaefer talks with Hawken Miller from Newport Beach, California. Hawken is a features writer for SMA News Today’s parent company, BioNews, as well as a columnist for Muscular Dystrophy News Today. He discusses growing up with Duchenne MD, the evolution of his journalism career, and learning about the SMA community. ================================ Link to Hawken’s c...
37m May 18, 2021
37m
Sex And The Number of Copies of The SMN 2 Gene Can Influence Age of Onset for SMA Type 3 Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses how sex, and the number of copies of the SMN 2 gene influence age of onset for Spinal Muscular Atrophy Type 3 patients. Also, DeAnn Runge shares Katie Napiwocki’s recent column, Keeping the ‘Wild Green Thorns’ of Advocacy Fatigue at Bay. Katie has an eloquent way of describing some of the struggles those with disabilities go th...
13m May 17, 2021
13m
UK NICE Expands Access to Spinraza for SMA Type 3 & The Disappointment of a Jaco Robotic Arm Denial
SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA), Type 3 patients. Also, DeAnn Runge talks about how disappointed she is that her appeal for the Jaco Robotic Arm was denied and how she’s not giving up. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanews...
6m May 14, 2021
6m
German Study Urges Newborn SMA Screening, Citing Better Outcomes & Managing Chaos
SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes. Also, Forums Director Kevin Schaefer reads a column about managing chaos when his caregiver’s car caught on fire. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstod...
9m May 12, 2021
9m
Grant Awarded to Find Affordable Treatments for Children & SMA Would You Rather
SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA). Also, on the forums a fun game of SMA Would You Rather is going on. Every couple of weeks a question is posted to the SMA community. Questions range from temperature preference to caregiver attributes. Other forum topics include blocki...
6m May 10, 2021
6m
Novartis Poised for Phase 3b SMART Study of Zolgensma & SMA Adventures
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma. Also, DeAnn Runge shares a recent adventure she went on to a greenhouse in the country. She even talks about how she was caught off guard and how she handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit ...
9m May 07, 2021
9m
Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy & Staying True To Yourself
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy. Also, Kevin Schaefer reads a column about staying true to himself and working in management. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/ Are you interested in learning more about spin...
12m May 05, 2021
12m
#81: Interview With Chaz Hayden - Writer and YouTuber with SMA
In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, and his upcoming young adult novel. ================================ Link to Chaz’s YouTube channel: https://www.youtube.com/channel/UCwPeqLbJO9s2v9UDrdbzbnQ ================================ Music C...
39m May 04, 2021
39m
#AANAM – Zolgensma May Lead to Faster, Greater Gains Than Spinraza
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants. Also, DeAnn Runge reads an article that really struck a chord with her. Halsey’s latest column, "It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes", dives into the unfavorable stigmatism that surrounds trachs and h...
11m May 03, 2021
11m
Neurofilaments Before Spinraza May Predict Motor Improvements & Reviewing The Sound of Metal
SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reviews the Oscar nominated film "The Sound of Metal". The plot of which features the drummer of a heavy metal band who suddenly loses his hearing. DeAnn draws several parallels to this fil...
10m Apr 30, 2021
10m
Health Canada Approves Evrysdi for At-home Treatment
SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about his friendship with a North Carolina senator. Link to Ari’s column: https://smanewstoday.com/columns/2021/04/22/importance-people-recognize-my-worth-senator-thom-tillis/ Are you ...
8m Apr 28, 2021
8m
Immune Response to Zolgensma Can Be Common in Older SMA Children
SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children. Also, SMA News Today content creator DeAnn Runge focuses on a couple columns that struck a chord with her. Brianna’s latest column, "The Green-eyed Elephant in the Room", talks about something she’s had to contend with her whole life:...
9m Apr 26, 2021
9m
Prenatal Enrollment Yields Faster Results from Newborn Screening
SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments. Also, DeAnn Runge shares how she turned around a frustrating situation into success all while keeping her cat entertained. Are you interested in learning more about spinal muscular atrophy? If so, please visit htt...
10m Apr 23, 2021
10m
Apitegromab Improving or Stabilizing Motor Function in Children And Young Adults With Small
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a column about his wheelchair malfunctioning and how he handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://...
10m Apr 21, 2021
10m
#80: Updates on Apitegromab and Discussing SMA Columns
In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news stories and forum topics. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: -Cost of Rare Diseases in US? ...
38m Apr 20, 2021
38m
European Alliance Calls for Newborn Screening & Allergy Season, Sleep Solutions and SMA Treatments
SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge talks about the latest topics being discussed on the forums. As allergy season is ramping up ways to combat the symptoms are an all-important area of con...
7m Apr 19, 2021
7m
Architecture Of The SMN Complex Is Altered In People With SMA & Comparing Wheel Drive Wheelchairs
SMA News Today’s multimedia associate, Price Wooldridge, discusses the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA). Also, throughout her lifetime DeAnn Runge has had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In her latest Dose of DeAnn vlog she shows a glimpse of all three and talks about making her decision. ...
9m Apr 16, 2021
9m
Spinal Fluid Changes With Spinraza’s Use Mild, Possibly Due to Lumbar Puncture
SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Apr 14, 2021
10m
Evrysdi Approved in Europe as First Oral, At-home Treatment & The Evrysdi Chronicles
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead. Are you interested in learning more about spinal muscular at...
11m Apr 12, 2021
11m
Benefits of SMA Newborn Screening Outweigh Disadvantages In New Survey & Everyday Struggles With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages. After watching a YouTube video where a wife and another friend help a gentleman with quadriplegia into a hot tub, DeAnn Runge talks about the struggles of certain activities and questions if they’re worth the effort. Are you interest...
10m Apr 09, 2021
10m
#79: Interview With Ainaa Farhanah, a Graphic Designer Living with SMA
In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college, and advocating for others with disabilities. Note: Ainaa does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with ...
26m Apr 08, 2021
26m
Scholar Rock Wins US Patent for Apitegromab & Receiving The COVID-19 Vaccine And Getting Outside
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer talks about returning to movie theaters after receiving the COVID-19 vaccine. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Apr 07, 2021
7m
Zolgensma Helped Pre-symptomatic Babies Achieve Age-Appropriate Motor Milestones
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma helped pre-symptomatic babies with Spinal Muscular Atrophy (SMA) achieve age-appropriate motor milestones. Instagram is a fantastic way to connect with the SMA community. Kevin Schaefer has been host for live conversations with Dr. Danielle Sheypuk and Alyssa Silva who talked about a wide range of topics. Upcoming...
11m Apr 05, 2021
11m
Zolgensma Continues to Prevent Motor Function Decline for 5 Years
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgenzma continues to prevent motor function decline for five years for patients with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge talks about how justifying our needs has become second nature. She discusses how she’s appealing a denial for the Jaco Robotic Arm as well as other hoops she ...
12m Apr 02, 2021
12m
Evrysdi Leads to Longer-term Benefits for SMA Types 2, 3, Data Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi leads to longer-term benefits for Spinal Muscular Atrophy (SMA) patients, Types 2 and 3. Forums Director Kevin Schaefer talks about disability representation in the movie “Zack Snyder’s Justice League.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12m Mar 31, 2021
12m
Zolgenzma Found To Be Safe And Effective in SMA Toddlers & The Importance of Schedules And Routines
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being found safe and effective in Spinal Muscular Atrophy (SMA) toddlers. Also, DeAnn Runge welcomes new listeners and forum members as she points out the forums are a supportive and informative community. Vaccine discussions continue as vaccination site crowd size becomes concerning. The importance of schedules and r...
10m Mar 29, 2021
10m
Evrysdi Safe in SMA Patients Previously Given Other Therapies & The Evolution of Technology
SMA News Today’s multimedia associate, Price Wooldridge, discusses how treatment with Evrysdi is safe in Spinal Muscular Atrophy (SMA) patients previously given other therapies. DeAnn Runge talks about how much technology has evolved in her lifetime. From cassette tapes to digital music she discusses how the advancements have enhanced her life. Are you interested in learning more about spinal...
9m Mar 26, 2021
9m
SMA Foundation and PTC Joint Efforts to Fund Regenerative Medicine Research
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA Foundation and PTC Therapeutics joint efforts to fund regenerative medicine research. Also, Forums Director Kevin Schaefer shares his perspective on getting the COVID-19 vaccine. Also, he discusses an Instagram live series he’s hosting on the topic of relationships and SMA. To learn more about spinal muscular atrophy, ...
6m Mar 24, 2021
6m
Reldesemtiv Aids Motor and Respiratory Strength in Types 2 and 3, Early Trial Finds
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the therapy, Reldesemtiv, aids motor and respiratory strength in Spinal Muscular Atrophy (SMA) Types 2 and 3. Also, with vaccinations ramping up across the country daydreaming is a popular trend on the forums. Post vaccination activities top the list. Recent articles by SMA News Today columnists are always of interest as we...
9m Mar 22, 2021
9m