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1 month ago | 
dravetsyndromenews.com | Meagan Earley |Mary Chapman |Lindsey Shapiro
Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back, just to make sure. Even though I felt at peace on the property, my feelings were confirmed. It wasn’t that I didn’t have happy memories there; they were all around me.
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2 months ago | 
angioedemanews.com | Marisa Wexler |Mary Chapman |Danita Jones |Andrea Lobo
The government agency in Portugal that regulates human medicines, Infarmed, has recommended Orladeyo (berotralstat) for the routine prevention of swelling attacks in people with hereditary angioedema (HAE), ages 12 and older. With this positive recommendation, HAE patients in the country will now be able to access Orladeyo treatment.
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Dec 9, 2024 | 
friedreichsataxianews.com | Jean Ker Walsh |Marisa Wexler |Mary Chapman |Kendall Harvey
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The holiday season is upon us. For many, it’s a time to gather with friends and family we don’t see that often. It’s also a time when the ever-innocuous question “How are you?” is frequently asked. That question — one we routinely respond to with “fine” — seems so benign.
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Dec 3, 2024 | 
dravetsyndromenews.com | Andrea Lobo |Lindsey Shapiro |Marisa Wexler |Mary Chapman
Health-related quality of life is low for parents of children with Dravet syndrome relative to the general public in Sweden, with higher levels of anxiety, depression, and other mental health challenges, along with poorer sleep, a study found.
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Nov 20, 2024 | 
friedreichsataxianews.com | Matthew Lafleur |Marisa Wexler |Mary Chapman |Elizabeth Hamilton
“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds of times, thoughts of identity and destiny clouded my mind anew, as my birthday was in a few days. Sometimes I wonder if I’m consistent. My path to adulthood hasn’t been smooth; my goals and plans have changed since this song premiered when I was in high school.
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Oct 21, 2024 | 
friedreichsataxianews.com | Jean Ker Walsh |Steve Bryson |Mary Chapman |Elizabeth Hamilton
While attending a recent Friedreich’s ataxia (FA) symposium, I tried, as I always do, to take in the science. I’m grateful that the annual symposium, held by the Friedreich’s Ataxia Research Alliance (FARA) and the Friedreich’s Ataxia Center of Excellence at the Children’s Hospital of Philadelphia, always moves so fast. But my social science-trained brain can’t always keep up with all of the medical information that’s presented.
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Sep 18, 2024 | 
friedreichsataxianews.com | Matthew Lafleur |Mary Chapman |Kendall Harvey |Jean Ker Walsh
Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to bring me a miraculous healing from Friedreich’s ataxia (FA). For most of my life, I believed miracles were transactional and only went to upstanding people. That sort of prayer was shortsighted, but it gave me the strength to persevere.
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Sep 10, 2024 | 
dravetsyndromenews.com | Andrea Lobo |Marisa Wexler |Mary Chapman |Meagan Earley
The Dravet Syndrome Foundation (DSF) is partnering with the Mason’s Movement Foundation to provide bereavement support to families who have lost someone to Dravet syndrome. The partnership connects bereaved families to a Mason’s Movement initiative called the Good Mourning Project, which provides resources, support, and remembrance items to parents and siblings. The goal is to ensure grieving Dravet families in the U.S. have access to resources that may help them through a difficult time.
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Aug 27, 2024 | 
dravetsyndromenews.com | Steve Bryson |Mary Chapman |Lindsey Shapiro |Marisa Wexler
The newly created DANCE checklist, to be completed by caregivers, may help diagnose additional conditions that often occur alongside Dravet syndrome by identifying non-seizure features — such as language, cognitive, and behavioral problems — seen with this type of epilepsy, according to a pilot study that tested the use of this novel tool.
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Aug 20, 2024 | 
dravetsyndromenews.com | Marisa Wexler |Meagan Earley |Patricia Inacio |Mary Chapman
Targeting a heart protein called NaV1.6 may help prevent sudden death in adults with Dravet syndrome, a study in mice suggests. The study, “Cardiac-Specific Deletion of Scn8a Mitigates Dravet Syndrome-Associated Sudden Death in Adults,” was published in JACC: Clinical Electrophysiology.
