Campaign to Persuade States to Screen Newborns for SMA to Be Key Topic at Conference


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Conference screening campaign

A revved-up campaign to persuade the U.S. government to ask states to screen newborns for spinal muscular atrophy will be a hallmark of this year’s SMA Conference in Orlando.

The agenda includes a symposium to train what the conference’s organizers call spinal muscular atrophy champions to push for newborn screening in their states. The event will be at Walt Disney World, June 29-July 2.

Cure SMA noted that the symposium follows an announcement in May that the federal government will review whether to recommend that states screen newborns for spinal muscular atrophy. In the United States, states decide what conditions to screen newborns for, but the U.S. government’s recommendations carry considerable weight.

The group that will decide whether the government should add SMA to the recommendations list is the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children. The head of the department, the secretary of Health and Human Services, will make the final call on adding the disease to the list if the committee decides it should be on it.  The final decision is expected in mid-2018.

The symposium will be from 7:30 to 8:45 a.m. in the Fantasia Ballroom on Sunday, July 2. Those taking part in the session will get a special breakfast for their effort.

The full convention schedule will include several sessions on how SMA patients can find a job. They will cover how to do job interviews, how to ask an employer for workplace modifications to accommodate SMA, and the rights that the Americans with Disabilities Act affords those with the disease.

An interesting session for those who help SMA patients is titled “Laughter Yoga for Caregivers.”

The agenda will also include question and answers sessions on SMA research. AveXis, Cytokinetics, La Roche and Novartis Institutes for Biomedical Research will lead a session on drugs that are under development. Biogen will lead one on obtaining access to, and reimbursement for, treatments.

Medical professionals will offer presentations aimed at helping patients and families decide which workshops they’re most interested in. The presentations will include “Getting the Most Out of What You Eat! Nutrition for Oral Feeders;” “Orthopedic Management Standing, Walking, and Mobility – Decision-making and Options;” “The Role of PT and OT in Your Child’s Life – Being Part of the Team!;” “Tube Feeding and SMA – Recommendations and Practices;” and “Women’s Health in SMA.”

Conference organizers are expecting a record turnout of 2,000 patients, families, caregivers, and medical professionals, including 450 researchers, according to a press release,

Cure SMA is partnering with Walt Disney to offer special Disney Meeting and Convention Theme Park tickets. To obtain the discount, tickets must be purchased in advance.

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