[Congressional Record (Bound Edition), Volume 155 (2009), Part 15]
[Extensions of Remarks]
[Page 20558]
[From the U.S. Government Publishing Office, www.gpo.gov]




  HONORING BRITTANY LEAP'S FIGHT AGAINST NEURODEGENERATION WITH BRAIN 
                           IRON ACCUMULATION

                                 ______
                                 

                        HON. GERALD E. CONNOLLY

                              of virginia

                    in the house of representatives

                         Friday, July 31, 2009

  Mr. CONNOLLY of Virginia. Madam Speaker, I rise today to recognize 
the bravery and fortitude of a very special and courageous constituent 
of mine, Brittany Leap; and her mother, Sandy, and father, Richard. In 
February 2006, Brittany was diagnosed with a debilitating and 
degenerative disorder--Neurodegeneration with Brain Iron Accumulation 
(NBIA).
  NBIA is a very rare and devastating neurological disorder that only 
gets worse over time--resulting in constant muscle cramping, an 
inability to control one's body, difficulty with speech, a loss of 
peripheral vision, and even blindness. No cure or specific means of 
treatment currently exists for NBIA, and scientists are still baffled 
by the factors that influence the disease.
  Imagine waking up one morning having lost the ability to walk, or 
talk, or even eat. In Brittany's case, however, this is no dream. This 
is a very real challenge that Brittany faces every day of her life. To 
make matters worse, one of the few laboratories dedicated to 
researching her disease is at risk of having to close its doors because 
of a lack of funding; doors that upon closing will forfeit the hope of 
Brittany, her family, and the thousands of other people suffering from 
NBIA, that a cure may one day be realized.
  Brittany is determined to continue fighting this disease and the 
potentially devastating consequences of what will happen if the 
research to develop a cure is suspended. She is unwavering in her 
pursuit to raise the funds necessary to keep hope alive, not only for 
her, but for everyone else with NBIA. Brittany has taken it upon 
herself, with the help of her loving parents--and so many others across 
this great nation--to raise $250,000 by year's end to keep the search 
for a cure alive.
  Madam Speaker, I ask my colleagues to join me in wishing Brittany and 
her family and all others with NBIA our heartfelt regards for their 
efforts to bring an end to this devastating illness, and I ask they 
give their support in any way possible to help Brittany in her efforts. 
I am inspired by Brittany's determination and I am honored to bring her 
story to the floor of this Chamber.

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