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2 months ago | 
hemophilianewstoday.com | Marisa Wexler |Susie Strachan |Jennifer Lynne |Andrea Lobo
Ixinity (trenonacog alfa) can effectively prevent and control bleeds in young children with severe or moderately severe hemophilia B, according to data from a Phase 3/4 clinical trial. “This study showed that [Ixinity] was safe and effective as prophylaxis and for controlling bleeds in previously treated persons with hemophilia [younger than] 12 years,” researchers wrote.
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2 months ago | 
alsnewstoday.com | Margarida Maia |Dagmar Munn |Mary Chapman |Susie Strachan
Fifteen nonprofit organizations across the U.S. formed a new ALS group, ALS United, to better address the needs of people living with amyotrophic lateral sclerosis (ALS) and drive advances in research toward better treatment options or a cure. The groups said they plan to pool resources to support and advocate for patients and their families at the state and national levels, and to promote research efforts worldwide.
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Nov 14, 2024 | 
friedreichsataxianews.com | Marisa Wexler |Susie Strachan |Elizabeth Hamilton |Sean Baumstark
The relationship between Friedreich’s ataxia (FA) patients and their caregivers can be complex. To make it work for everyone involved, it’s important to practice open communication and empathy, and to ask for help whenever it’s needed. Those are the key takeaways from a new webinar, “Stronger Together: Patient and Caregiver Collaboration in FA,” which was presented Nov. 6 by Friedreich’s Ataxia Newsand its parent company, Bionews.
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Nov 7, 2024 | 
musculardystrophynews.com | Margarida Maia |Betty Vertin |Susie Strachan |Robin Stemple
Specific genetic mutations in Duchenne muscular dystrophy (DMD) influence how long patients retain the ability to walk, even when treated with corticosteroids, according to a study that highlights the importance of genetic testing in predicting disease progression.
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Oct 15, 2024 | 
smanewstoday.com | Susie Strachan |Mary Chapman |Kevin Schaefer
This definitely happened, especially with the treatment of the new drugs that came out for spinal muscular atrophy, right? There were so many options, and as drugs were getting approved, I spoke to my neurologist. I let them know about the new treatment. They told me that, you know, it had only been approved for children, that the options, you know, or the studies weren’t really there for adults, which I totally respected. I respect her opinion.
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Oct 15, 2024 | 
smanewstoday.com | Susie Strachan |Mary Chapman |Kevin Schaefer
Before I decided to get treatment, I was only seeing my doctor once a year. And so it was very simple for me to kind of pick that time during the summer. I live in Chicago, so I try not to go out as much during the winter, even for doctor’s appointments if I can avoid it. Plus people are sick, so I don’t want to be in hospitals.
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Oct 15, 2024 | 
smanewstoday.com | Susie Strachan |Mary M. Chapman |Kevin Schaefer
Dr. Smith: I don’t think I ever practiced tough love. Maybe I should have. But I have always viewed my role as a physician as being someone who can present options in as unbiased a manner as possible, but present options with pros and cons, and knowing there’s no way around the bias. And making sure that patient and their family know that regardless of what they choose, our physician-patient relationship is as strong as it can be — it’s not going to impact that in any particular way.
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Sep 13, 2024 | 
myastheniagravisnews.com | Allen Francis |Lindsey Shapiro |Shawna Barnes |Susie Strachan
Hello! My name is Allen Francis. I’m a New York City native, former academic adviser, and currently a full-time freelance writer. Besides a need to lose a few pounds, a short battle with skin cancer, and some mild hypertension, I’m a moderately healthy person. I’m now a columnist for Myasthenia Gravis News to help amplify awareness about that medical condition.
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Jul 24, 2024 | 
fabrydiseasenews.com | Susie Strachan
Living with Fabry disease means treatment to slow symptom progression and taking care of diet, exercise, and mental health.
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Jun 5, 2024 | 
myastheniagravisnews.com | Shawna Barnes |Lindsey Shapiro |Susie Strachan
“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?”These were two questions I was asked recently by a client of mine. She had come in to The Nook (a shared workspace I run) for some “tech help”. This was not her first time coming in for tech help and I’ve discussed my challenges of treating myasthenia gravis with her before. As we sat there just chatting away before we got down to work, she asked me these questions.
