Activities and events have been planned to raise public knowledge and understanding of phenylketonuria (PKU) on June 28 — International Phenylketonuria Day. Due to the ongoing COVID-19 pandemic, the day will be celebrated online.
PKU Day takes place on June 28 in honor of Robert Guthrie and Horst Bickel, both born on this day.
Guthrie, a microbiologist born in 1916, invented the newborn PKU screening that today is known as the “Guthrie test.” In turn, Bickel, a German doctor who was born in 1918, was the first to develop a low-protein diet for people with PKU. Because the inherited disorder typically leads to the toxic build-up in the blood of phenylalanine — an amino acid, which is one of the building blocks of proteins — patients require a special diet that is low in protein. Bickel also established PKU screening in Germany.
The National Society for PKU, a U.K. charity, will host an all-day free “telethon” to bring the community together and raise funds for education, research, and patient advocacy. Events will include an online workout, a lecture on the history of PKU treatment in the U.K., a cooking show, a Q&A session, an awards ceremony, and a virtual family pub quiz.
Filmmaker Tom Chimiak, who has PKU, will host the NSPKU cooking event. In addition, Chimiak will lead a video chat on YouTube with Killian James Fitzgerald, who also has PKU, regarding experiences living with the disease. Fitzgerald, of the PKU Association of Ireland, has written in the past about his own challenges of weight management as a PKU patient. Audience members are invited to ask questions.
June 28 also will be the final day to submit a nomination for the Sheila Jones Award for patient advocates. The award, created by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, known as E.S.PKU, is open to individuals, groups, or organizations that advocate for people with PKU. The award, a trophy, will be presented at the next annual E.S.PKU conference in 2021; no date has yet been set.
The E.S.PKU launched the first International PKU Day in 2013. Organizers of the 2020 event said the celebration this year could not be more needed.
“This year we are all living with PKU AND the problems and isolation caused by the coronavirus pandemic,” the organization says on its website. “It’s never been more important to find a way to connect with each other.”
All of the organizers are encouraging the use of hashtags to bring the wider PKU community, as well as friends and other supporters, together on social media. Hashtags include #PKUDay, #PKUDay2020, and #Smiles4PKU.
In Spain, the Federación Española de Enfermedades Metabólicas Hereditarias — the Spanish Federation of Inherited Metabolic Disorders — has organized the #SinProChallenge2020 to bring attention to the dietary needs of people with PKU. For 24 hours on June 28, all are welcome to eat low-protein diets and share their experiences under the hashtags #SinProChallenge #DiaMetabolico, #piensaenmetabolico, and #PkuDay.
A photo challenge for the best low-protein recipes will be held by the National Phenylketonuria Association in Algeria. Authorized products include fruits, vegetables, corn starch, sugar, and spices.
Links to events worldwide, designs for websites and personal social media profiles, and more information can be found at the PKU Day website here.