Association conference features living with ALS as part of program

No charge for patients, caregivers to attend ALS Association event

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by Mary Chapman |

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A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts.

That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort & Conference Center in Grapevine, Texas.

“ALS Nexus represents a significant step forward in our efforts to transform the experience of living with ALS,” Nicole Eck, chief strategy officer at the ALS Association, said in an association press release. “While there have always been separate conferences focused on ALS research, advocacy, or care, this will be the first conference integrating these areas around how we specifically make ALS livable and cure it.”

Attendees will be able to connect with peers and gain insights into the needs and experiences of the ALS community, and contribute to discussions that influence research, advocacy, and patient care initiatives, the association said.

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Sessions will spotlight novel solutions with an emphasis on the value of interdisciplinary collaboration, and will feature clinicians and researchers who specialize in ALS, as well as ALS patients and their families and friends.

Topics will include ALS treatment development, care access, the changing care landscape, palliative care, insurance coverage, and clinical trial efficiency. Sessions also will cover technology and ALS, next-generation research strategies, the power of caregiving, affordable access to genetic therapies, health disparities, familial ALS, and future advancements in treatment and care.

The conference will be structured around finding new treatments and cures, optimizing current treatments and care, and preventing or delaying the manifestations of ALS, the association said.

Participants are invited to attend the 10th anniversary of the Ice Bucket Challenge on July 16 at the nearby Paradise Springs water park. The challenge, designed to promote ALS awareness, has resulted in a marked increase in spending on research.

Patients and caregivers may attend the conference virtually or in person at no charge. The virtual option includes live-streamed and breakout sessions, as well as opportunities to connect with others. Registration is open.

Registration for in-person attendance is available to scientists, healthcare professionals, advocates, patients, and others. It includes access to the July 14 welcome reception and the following day’s Heroes Award dinner, in addition to all conference sessions. Clinicians and researchers also will be welcome at networking events. Lunch will be provided daily.

Early registration, which offers lower rates, ends on May 10. Standard registration runs to July 13. On-site registration also is available, but “space is limited, and early registration encouraged,” the organization said.

For all paid registrants, there is a $250 cancellation fee, with balances refunded until May 17.

The ALS Association, the world’s largest ALS organization, funds global research collaborations, assists patients and their families, and advocates for patients.