BENEFITING: Children's Hospital of Pittsburgh Foundation
EVENT DATE: Jun 20, 2015
Hello Family and Friends,
I am participating in the Franklin Lakes/Wyckoff Triathlon again. I am hoping to raise money and awareness for research conducted for children with very rare genetic metabolic disorders. All proceeds will go to Children's Hospital of Pittsburgh Foundation *Fisch Fund* www.givetochildrens.org. Please help this cause which is near and dear to my heart. Thanks to compassionate caring people, doctors and research teams we can help children and families who are affected by these illnesses, to cope and possibly live a better quality of life. We appreciate anything you can give.
Love and gratitude,
As you all know my youngest child Emma has a very rare metabolic condition called TFP (trifunctional protein deficiency). She is not able to metabolize essential fats that maintain brain function, heart function, fasting capabilities and reserve for stress/illness. These individuals often suffer from cardio myopathy, peripheral neuropathy, muscle breakdown and weakness, and other long term ailments that affect their quality of life. My daughter has had cardio myopathy since 8 months old. She must eat every 4 hours around the clock and tires very quickly, as these children cannot store energy for daily use. Through all these efforts we can make a difference. Thank you!