Inaugural awareness event debuted exclusive stories, news, and resources for the CIDP community
CIDP Awareness Month
CIDP (chronic inflammatory demyelinating polyneuropathy) Awareness Month was celebrated with the launch of CIDP Beacons, a virtual awareness event hosted by Lynn Rogers, in early May.
Lynn is a CIDP community advocate, biomedical engineer, and accomplished athlete living with CIDP. She gained press attention for completing 2 marathons and competing in several IRONMAN races after her CIDP diagnosis. However, Lynn has also dealt with relapses and significant struggles related to CIDP, which helped her incorporate deep compassion and care for the community as our host.
Premiere of Rare, Well Done
The event unveiled a trailer for Rare, Well Done, the first-ever reality series, produced by argenx, featuring people living with CIDP. The show follows the Thrive Team, a squad of various experts who helps people living with CIDP make a little more room in their lives for joy, sometimes in surprising ways.
Click the link below to watch the first episode of Rare, Well Done. The Thrive Team helps Wayne, a retiree in California, find more time for 2 of his favorite things: his family and the beach.
Building Teamwork: A Patient/Doctor Q&A Session
An engaging conversation spotlighted Scott, who lives with CIDP, and Dr. Sonia Caraballo-Cartagena, a treating neurologist. They discussed ways to help strengthen the CIDP patient-doctor relationship and enhance their communication to reach the best possible outcomes. Watch the segment in the CIDP Beacons recap video.
The Q&A concluded with host Lynn encouraging viewers to download our Discussion Guide—you can also download below. Use it to track symptoms and abilities to help you have more informed conversations with your doctor.
Exciting news!
The show announced exciting news about an upcoming CIDP documentary airing on PBS stations. This episode of Medical Stories, the prestigious, multiple Emmy Award-winning documentary film series, will explain CIDP through real-life stories of 2 people living with the condition.
Information about local airdates and times will be published on ShiningThroughCIDP.com as soon as it becomes available.
CIDP Beacons grand finale
The grand finale displayed the first-ever national network of lighthouses beaming their light for CIDP awareness.
The inspiring presentation was introduced by Lisa Butler, Executive Director of the GBS | CIDP Foundation International, who called on all attendees to act as CIDP awareness beacons in their local communities. Be sure to watch the video until the end for the finale!
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