The harsh reality of living with a relatively unheard of a rare metabolic disease will soon be brought to light, center stage in Buffalo, NY. This monumental undertaking first began when WNYers Staci and Eddi Stincelli-Kasprzyk discovered that their daughter had contracted Phenylketonuria aka PKU. As any loving parents would do, once they discovered that there was little information on the disease, they reached out to the National PKU Alliance (NPKUA) to learn as much as they could, in order to give their daughter the best life that they could.
It turns out that 1 in 10,000 infants born in the United States is struck with PKU. Those with the affliction do not have the liver enzyme needed to process phenylalanine, making it impossible to process food, which leads to toxic build ups in the central nervous system, particularly the brain. Living with this condition means maintaining a strict diet that is difficult to maintain (low-protein diet and dietary medical supplemental foods). Aside from the dietary restrictions, the medical regimen associated with PKU is costly.
“Shortly after the birth of our precious daughter, Norah, we received the news that she has a rare metabolic disease called PKU,” said Staci. “Without unimaginable dietary restrictions, she would be become developmentally, intellectually and neurologically disabled in less than two years.”
It was for these reasons that Staci and Eddi sought out help from NPKUA. What they learned was, the best way to make a difference in their community was to raise funds and awareness. The couple became aware that there was an established event called Lifting the Limits that was held at a different city each year. It was then that they realized what they needed to do – join the rank of other cities that have hosted a Lifting the Limits for PKU event. The goal for the Buffalo fundraiser is $100,000.
The overall funding strategy of the NPKUA is to support projects that will promote advances in the treatment and management of PKU, with the long term goal of facilitating the development of a cure.
“We have learned that diet is not enough to prevent changes in the brain composition and function, even in treated individuals like Norah,” Staci said. “We hope you will join us in our mission, as we strive to brighten futures and ‘lift the limits’ for Norah.”
The goal for the event is to raise $100,000.
“Funding the most promising peer-reviewed research that will lead to new therapy discoveries and a cure is our goal with holding these events,” stated Christine Brown, Executive Director of NPKUA.
Previous cities hosting Lifting the Limits events included: Nashville, TN; Boston, MA; and Seattle, WA.
If you wish to sponsor or make a donation Lifting the Limits for PKU: Buffalo, NY visit npkua.org/News-Events/Lifting-the-Limits/Buffalo-2017 or www.facebook.com/events/151112321984889 or email Staci at firstname.lastname@example.org or call at 716-725-3212.
Lifting the Limits for PKU
Co-hosted by Staci & Eddie Kasprzyk
SATURDAY APRIL 29 2017
Statler City Ballroom
107 Delaware Ave
Buffalo New York 14202
Standing Cocktail Reception
Raffle * Live Auction * Live Entertainment * Food * Drinks * Fundraising