[Congressional Record Volume 168, Number 158 (Thursday, September 29, 2022)]
[Extensions of Remarks]
[Pages E1002-E1003]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    RECOGNIZING AHUS AWARENESS MONTH

                                 ______
                                 

                           HON. PATRICK RYAN

                              of new york

                    in the house of representatives

                      Thursday, September 29, 2022

  Mr. RYAN of New York. Madam Speaker, I rise today to call awareness 
to a rare disease named Atypical Hemolytic Uremic Syndrome or AHUS and 
recognize a constituent who is making a difference. September is 
recognized as AHUS awareness month. AHUS is a life-threatening, genetic 
disease of uncontrolled complement activation that affects adults as 
well as children. AHUS damages the kidneys. Without treatment, many 
patients will need long-term dialysis or a kidney transplant if their 
kidneys begin to fail. 1 in 5 adult patients experiences pulmonary 
symptoms, extremely

[[Page E1003]]

high blood pressure, and swelling. The AHUS Community is fortunate to 
have several infusion therapies.
  AHUS was brought to my attention by a constituent, Barbara Farcher. 
The Farcher family resides in Saugerties, New York in my Congressional 
district. The family was unexpectedly discovered to have the disorder 
in their family when one of their sons was diagnosed. Barbara and her 
family have taken up the cause of the AHUS over the last 10 years. 
Barbara has advocated for access to coverage for the community. In 
2021, Barbara and a group of advocates founded the patient advocacy 
group, the AHUS Action Network. The mission of AHUS Action Network is 
to serve as a gathering place for patients to be mobilized to advocate 
for the AHUS community concerns at the local, state, and federal 
levels; to be informed about issues affecting the AHUS Community, and 
to train for more effective patient advocacy; and engage in encouraging 
connection, awareness, and solidarity within the AHUS Community.
  Madam Speaker, we can work together to ensure increased research for 
AHUS so the community can realize improved treatments and a cure for 
this rare disease.

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