[Congressional Record Volume 168, Number 107 (Thursday, June 23, 2022)]
[Extensions of Remarks]
[Page E664]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




             RECOGNIZING NATIONAL SCLERODERMA AWARENESS DAY

                                 ______
                                 

                           HON. BRIAN HIGGINS

                              of new york

                    in the house of representatives

                        Thursday, June 23, 2022

  Mr. HIGGINS of New York. Madam Speaker, today I rise to honor the 
estimated 300,000 Americans living with Scleroderma, an autoimmune 
disease for which there is currently no cure, and we are unsure of its 
cause. The actions of individuals like Amy Gietzen and organizations 
such as the National Scleroderma Foundation have helped--and will 
continue to help--the community of individuals affected by Scleroderma 
spread awareness about this disease and work to advance research on a 
cure.
  Scleroderma is an autoimmune disease that affects connective tissue 
and the vascular system through the excess production of collagen. A 
localized version of the disease can cause thickening and scarring of 
connective tissue, or fibrosis, in small areas of the skin. Scleroderma 
can also be systemic and result in fibrosis in the internal organs. 
Scleroderma can affect almost anyone and results in issues with the 
skin, muscles, joints, blood vessels, and in some cases, the heart, 
lungs, and esophagus. The disease is progressive, presents differently 
in every individual, and, in many cases, can be terminal.
  Amy Gietzen, born and raised in Buffalo, NY, was diagnosed with 
Scleroderma when she was just 19 years old and has been living with the 
diagnosis ever since. Today, Ms. Gietzen is on the Board of Directors 
for the Buffalo chapter of the National Scleroderma Foundation, and she 
serves as the Chair of the Patient Education and Support Committee.
  In addition to her involvement with the National Scleroderma 
Foundation, Ms. Gietzen is a columnist for the online publication 
Scleroderma News. She also travels across the country to speak publicly 
about her experiences with Scleroderma and her personal medical 
journey. In her quest to raise awareness for the disease, Ms. Gietzen 
has made it a priority to share her personal story and support others 
who receive a Scleroderma diagnosis.
  Organizations like the National Scleroderma Foundation are similarly 
working to support those living with the disease. The National 
Scleroderma Foundation was founded in 1998 to ``advance medical 
research, promote disease awareness, and provide support and education 
to people with scleroderma, their families, and support networks.'' The 
Foundation provides resources including research updates and support 
groups. The National Scleroderma Foundation is focused on building a 
sense of community and solidarity for those living with Scleroderma.
  I am proud to join the National Scleroderma Foundation in recognizing 
June 2022 as National Scleroderma Awareness Month and celebrating 
National Scleroderma Awareness Day on June 29, 2022. Throughout this 
month, the National Scleroderma Foundation is promoting the 
``#tealforscleroderma'' campaign. To show support for those living with 
Scleroderma and raise awareness about the disease, on June 29th, lights 
on the Peace Bridge, Niagara Falls, and The Electric Building in 
Buffalo will turn teal.
  It is due to the efforts of individuals like Ms. Amy Gietzen that I 
speak on this matter today. I thank Ms. Gietzen for her perseverance in 
the face of this disease and her tireless work advocating for 
scientific advancements, and I ask my colleagues to join me in 
recognizing the courageous work of Ms. Amy Gietzen and the National 
Scleroderma Foundation and go #tealforscleroderma.

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