Fundraising and Advocacy Efforts Set to Mark National PKU Awareness Day on Dec. 3

Fundraising and Advocacy Efforts Set to Mark National PKU Awareness Day on Dec. 3
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Fundraisers, and educational and advocacy activities are afoot to mark National PKU Awareness Day on Dec. 3.

The National PKU Alliance (NPKUA) is leading efforts to observe the day set aside to call attention to phenylketonuria (PKU), a genetic metabolic disorder that causes an amino acid (a building block of proteins) called phenylalanine to accumulate in the body. The disease affects about 16,500 residents in the U.S.

“We encourage local organizations, volunteers and families to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for NPKUA programs such as advocacy, education, maternal PKU and research because these events benefit you personally,” the organization states on its website.

The NPKUA events page features a video that supporters and advocates may use to get local media outlets to share PKU stories to help garner state and federal legislative support for patients’ and caregivers’ needs. The video is complemented by a toolkit that outlines how best to get local media coverage of personal stories or observance events.

Other suggestions to raise awareness include distributing the awareness flyer, the PKU Facts for Kids sheet, and the PKU Facts for School Faculty and Staff at work or school, or in the community. Parents of young patients may also ask to make a presentation at their child’s school. Downloadable stickers and images are available here.

The organization is also asking patients, caregivers, and other supporters to share their stories and photos on their social media platforms, and use the hashtag #PKUAwareness2019 and #ShowYourRare. Supporters may also post on the organization’s Facebook page, and share experiences about life with PKU on Instagram or Twitter. They can also watch and share videos from NPKUA’s YouTube channel.

The nonprofit organization also suggests hosting a fundraising or awareness-raising community event, such as an art show, backyard carnival, bake sale, car show, bike or walk, small dinner, flower sale, craft fair, game night, cookbook sale, restaurant night, silent auction, raffle, talent show, garage sale, tribute or memorial, or concert.

In addition, participants may check out the organization’s “Take Action” advocacy page to read about pertinent federal and state issues — including newborn screening and insurance coverage of medical foods — and learn how to help.

Donations are welcome to help NPKUA improve the lives of patients through advocacy and education, and to accelerate research for treatments and a cure. The organization includes leaders of local groups across the U.S., as well as academic, medical, and industry representatives.

Visit this site for a listing of other PKU organizations and for disease information.

PKU is caused by a defect in the gene that helps produce the enzyme needed to break down phenylalanine. Without the enzyme, phenylalanine can accumulate and is toxic to the brain. Phenylalanine is found in all proteins, most foods, and in some artificial sweeteners.

The disease can lead to intellectual disability, seizures, behavioral problems, and mental disorders. To help manage it, PKU patients — usually diagnosed at birth — must closely monitor their phenylalanine levels throughout their lives.

 

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Margarida graduated with a BS in Health Sciences from the University of Lisbon and a MSc in Biotechnology from Instituto Superior Técnico (IST-UL). She worked as a molecular biologist research associate at a Cambridge UK-based biotech company that discovers and develops therapeutic, fully human monoclonal antibodies.
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