... References Best Practices for Physical Therapists & Clinical Evaluators in Spinal Muscular Atrophy (SMA) — Cure SMA Spinal Muscular Atrophy: The Use of Functional Motor Scales in the Era of Disease-Modifying Treatment — Child Neurology Open Describing SMA — Cure SMA Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND ...
What Is the CHOP INTEND Motor Test for SMA?
... References Best Practices for Physical Therapists & Clinical Evaluators in Spinal Muscular Atrophy (SMA) — Cure SMA Spinal Muscular Atrophy: The Use of Functional Motor Scales in the Era of Disease-Modifying Treatment — Child Neurology Open Describing SMA — Cure SMA Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND ...
... A child’s score depends on their age, level of development, and how severe their SMA is.Why the HINE-2 Test MattersThe HINE-2 motor test gives doctors and researchers a clear way to measure how SMA affects movement in young children. ...
What Is the HINE-2 Motor Test for SMA?
... A child’s score depends on their age, level of development, and how severe their SMA is.Why the HINE-2 Test MattersThe HINE-2 motor test gives doctors and researchers a clear way to measure how SMA affects movement in young children. ...
... muscular atrophy.Are you living with SMA-LED? ...
... Most types of SMA affect infants and young children, but a few affect older children (SMA3) and adults (SMA4 and some cases of SMA-LED). Symptoms typically begin after 30 years of age and may not appear until much later in life. ...
What Is Finkel Type SMA?
... Most types of SMA affect infants and young children, but a few affect older children (SMA3) and adults (SMA4 and some cases of SMA-LED). Symptoms typically begin after 30 years of age and may not appear until much later in life. ...
... These children, who all had SMA type 1, also experienced better motor function as the biomarker levels dropped. However, among older children with multiple SMN2 copies and SMA types 2 or 3, sNfL levels stayed stable. Overall, the researchers found that sNfL could be used as a biomarker that signals the severity of a person’s SMA. ...
Posted 10/26/2021
Blood Test May Help Predict Spinal Muscular Atrophy Severity, Treatment Effectiveness
... These children, who all had SMA type 1, also experienced better motor function as the biomarker levels dropped. However, among older children with multiple SMN2 copies and SMA types 2 or 3, sNfL levels stayed stable. Overall, the researchers found that sNfL could be used as a biomarker that signals the severity of a person’s SMA. ...
Posted 10/26/2021
... One study of 20 infants with SMA has measured the effects of nusinersen treatment over three years. Researchers found that nusinersen improved survival and helped the infants reach developmental milestones over the duration of the study. ...
Posted 10/05/2021
... References Breathing Basics: Respiratory Care for Children with Spinal Muscular Atrophy — CureSMA Spinal Muscular Atrophy (SMA): Signs and Symptoms — Muscular Dystrophy Association Breathing Risks and Care — CureSMA Spinal Muscular Atrophy (SMA): Medical Management — Muscular Dystrophy Association What is BiPAP? ...
Respiratory Equipment for SMA: What To Look For
... References Breathing Basics: Respiratory Care for Children with Spinal Muscular Atrophy — CureSMA Spinal Muscular Atrophy (SMA): Signs and Symptoms — Muscular Dystrophy Association Breathing Risks and Care — CureSMA Spinal Muscular Atrophy (SMA): Medical Management — Muscular Dystrophy Association What is BiPAP? ...
... Because SMA is a rare disease, there’s a good chance you may not already know people who can relate to what you and your family are going through. Meeting others who are also dealing with this condition can provide insight and inspiration for living with SMA. ...
Your Child Is Newly Diagnosed With SMA. Now What?
... Because SMA is a rare disease, there’s a good chance you may not already know people who can relate to what you and your family are going through. Meeting others who are also dealing with this condition can provide insight and inspiration for living with SMA. ...
... These events were designed to raise the collective voice of people with SMA, share their experiences, and showcase the important work happening within the SMA community.#SMASpotlight On 3 Patient Advocates ...
... For me, a doctor is worth seeing consistently if they make the effort to learn about SMA — though finding an SMA specialist in addition, for the sake of safety, is a good idea. Some people would consider a doctor’s unfamiliarity with SMA to be a negative, but I see positives in compromise. ...
Posted 01/13/2022
What Makes a Good Doctor for People With SMA?
... For me, a doctor is worth seeing consistently if they make the effort to learn about SMA — though finding an SMA specialist in addition, for the sake of safety, is a good idea. Some people would consider a doctor’s unfamiliarity with SMA to be a negative, but I see positives in compromise. ...
Posted 01/13/2022
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