Page 4 - Mobility Management, September 2019

editor’s note
SMA’s New Horizons
Pardon the unorthodox use of this month’s space, which is doing double duty so I can cover and comment on the 2019 Cure SMA [spinal muscular atrophy] conference in Anaheim, Calif., at the end of June.
This combined meeting — one track for families, a second for researchers — is one of my favorite events. The kids are
incredibly cute and smart; their families are open, welcoming and generous. The sense of “We’re all in this together” is so strong that many families who lost their own children
to SMA years ago continue to raise funds to help families living with SMA now.
This year, I was especially excited to attend because Zolgensma, a genetic treatment given once in a lifetime, had
been approved by the U.S. Food & Drug Administration (FDA) the month before. For the first time, two treatments (the other drug being Spinraza) were available for the genetic condi-
tion that’s the number-one cause
of infant death around the world.
The tone of the meeting felt jubi- lant. Spinraza and Zolgensma are new, and the latter in particular
is currently available to a limited group of patients. Funding for the treatments is challenging. Still, early results of both drugs have been so promising. How could you not feel hopeful?
Richard Rubenstein, Cure SMA’s board chair, addressed attendees in the June 29 opening session at the Disneyland
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Cure SMA’s President, Kenneth Hobby: “To optimize the treat- ments, we really have to pay attention to care.”
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Hotel. As he spoke, his son Max beamed from a projected photo behind him.
“This year,” Rubenstein said, “is very much about success and accomplishments.”
When Max was diagnosed, his parents were told their son had six months to live. Max passed away three years later.
Citing the new treatments, Rubenstein said, “No parent will ever have that message delivered to them about SMA. The diagnosis will not come
with that level of hopelessness.”
With a moment of silence, Kenneth Hobby, Cure
Chief Executive Officer Chief Financial Officer Chief Technology Officer
Executive Vice President
REACHING THE STAFF
Rajeev Kapur Sanjay Tanwani Erik A. Lindgren
Michael J. Valenti
SMA’s President, recognized the contributions of families whose children were born with SMA before treatments were avail-
able. He thanked members for “raising funds when they knew it wouldn’t be for their own families. Who did clinical trials knowing it wouldn’t be in time for them. And who took the placebos.”
Hobby also recognized the FDA, “because they’ve bought into the SMA community. The FDA goes above and beyond for SMA.”
Continued on page 6
4 SEPTEMBER 2019 | MOBILITY MANAGEMENT
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