[Congressional Record Volume 169, Number 83 (Wednesday, May 17, 2023)]
[Extensions of Remarks]
[Page E458]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                   RECOGNIZING WORLD NF AWARENESS DAY

                                 ______
                                 

                          HON. MIKIE SHERRILL

                             of new jersey

                    in the house of representatives

                        Wednesday, May 17, 2023

  Ms. SHERRILL. Mr. Speaker, I rise to recognize World NF Awareness 
Day. Each year, the Children's Tumor Foundation works to educate the 
public about this rare genetic condition that causes tumors to grow on 
nerves throughout the body. One in every two thousand children are born 
with some type of NF and I am grateful for the opportunity to join in 
the critical effort to raise awareness of this disease.
  NF is a group of genetic conditions that cause tumors to grow on 
nerves throughout the body. The impacts of NF can lead to long term 
disabilities and other serious health complications, including 
blindness, deafness. disfigurement, chronic pain, and cancer. Public 
awareness is essential to promoting early diagnosis and treatment to 
mitigate further complications of NF.
  NF affects each individual differently and listening directly to NF 
patients paints a fuller picture of the disease and the continued need 
for awareness. Mr. Alwyn Dias lives in New Jersey's Eleventh 
Congressional District with his wife and two children and is a powerful 
advocate for NF awareness, research, and treatment. Mr. Dias was 
diagnosed with NF as a child after finding a marble sized tumor on his 
back. He shared the pain he felt growing up feeling that he needed to 
hide NF from his peers and the strength he found later in sharing his 
story. I am grateful for his vulnerability in discussing the impact NF 
can have on mental health and for his continued advocacy with the 
Children's Tumor Foundation.
  The Children's Tumor Foundation does essential work to support those 
living with NF. Whether by funding world-class medical research, 
improving patient experiences in treatment, or offering support groups 
to patients and their families, the Children's Tumor Foundation 
provides an invaluable service to our community. They live up to their 
mission to drive research, expand knowledge, and advance care for the 
NF community, while working to one day find the cure.
  I am grateful to join the Children's Tumor Foundation in recognizing 
World NF Awareness Day and to support their efforts to make NF visible.

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