Page 6 - Mobility Management, September 2019

mm beat
Cure SMA Event Coverage Continued from page 4
Not the SMA We’ve Known
Hobby acknowledged that these treatments are rewriting what the healthcare community knows about SMA. “It’s not going to be
research and new treatments — by the 2020 conference in Orlando, Fla., in June, Cure SMA expects a third drug treatment
to be available
— Hobby said
the organiza-
tion will focus
on supporting people with SMA and their families.
National Seating & Mobility talked seating & mobility solutions with families.
the SMA we’ve known in the past,” he said. “In some ways, SMA is going to be new. New issues are going to be created.”
For example, Hobby said,
the effects of
Researchers hosted family-friendly poster presen- tations to share their work.
SMA might get milder, but new symptoms could appear. He referenced
“the new choices people are going to have to make,” including choosing which treatments to try, in what order, simultaneously or consecutively.
Rubenstein acknowl- edged that when Max died, “It was the darkest time in our lives.” But upon attending the conference, “We were met with the kindness and compas- sion of this community. We’re going to see more changes. We’re going to have a group of people
“Officer” Morgan Steward and his mom, Tangi Forman, were in the Quantum Rehab booth.
showing symptoms and a group of people who aren’t showing symp- toms. We accept all parents in this community. Everyone is included here.”
Indeed, Hobby acknowledged the need for this tight-knit group to continue to work together.
“The values we have had as
a community are not going to change,” he said. “If we’re talking with one voice, we’re powerful together, because of the strength of this community.”
In addition to continuing to fund
He cited greater customization of programs to ensure the organization provides plenty of support
to teens and adults with SMA. Cure SMA sends care packages of helpful products
to families of newly diagnosed infants and children; in the future, the organization will also send packages to teens and adults. Summits
Permobil’s Pilot manual wheelchair grows forward to preserve an optimal center-of-gravity location.
of Strength — one-day
events nationwide — will provide local
education and support for people who cannot attend the annual conference.
Cure SMA is building a registry to collect data on drug treatment results, and is educating healthcare profes- sionals on what SMA is and what treat- ment options are available. Future research will focus on treating SMA symp- toms, such as muscle involvement.
Amidst the meeting’s triumphant mood, Hobby told attendees, “We’re not done yet. We don’t have a cure.” m
Laurie Watanabe, Editor lwatanabe@1105media.com @CRTeditor
6 SEPTEMBER 2019 | MOBILITY MANAGEMENT
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