Dear [Congressperson / Senator],

I am a constituent in your [State OR District] and I am also an advocate for the Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and related syndrome community. These conditions affect the peripheral nervous system in debilitating ways. GBS is an acute condition characterized by a rapid onset- usually after a triggering event - of numbness and tingling that eventually leads to paralysis. CIDP, on the other hand, is a chronic, ongoing condition characterized by the waxing and waning of progressive weakness, numbness, and sensory loss throughout the body. In severe or untreated cases, patients may progress to wheelchair dependence. Variants of these conditions have similar characteristics, but patients may experience mildly different symptoms.

GBS, CIDP, and some variants are generally treated with intravenous immunoglobulin (IVIG).  Patients with chronic conditions (CIDP and a variant called MMN) require approximately monthly IVIG treatments for extended periods, often years or even decades. The GBS|CDP Foundation International sets a legislative agenda each year, and I look forward to reaching back out to you later this year with specific funding requests and possibly meeting with your office to discuss them. In the meantime, I would like to share with you some of the common issues that impact our community: