@macdonj profile picture
Anita MacDonald @macdonj

All tweets discuss low protein foods to help children on low protein diets. All views are my own.

Joined April 2013
  • Tweets 40,574
  • Following 633
  • Followers 1,911
10,886 Photos and videos
Pinned Tweet
Anita MacDonald@macdonj
Apr 29
This is a questionnaire for everyone with PKU or their carers. We want to know if you have been tested with sapropterin or not. What is your experience? We look forward to hearing from you nspku.org/survey-share-your-…

Survey - Share Your Experience of Sapropterin - The National Society for Phenylketonuria (NSPKU)

We would be very grateful for your help with a short questionnaire about your experiences with sapropterin so far. The […]

nspku.org
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Anita MacDonald retweeted
NSPKU@NSPKU
Jun 12
Please help us with our #PKU surveys! I explain who, what, why below 🤔 The link below is for 3 - THREE surveys to do….. If you haven’t done our sapropterin survey yet, please do this first: nspku.org/surveys/
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Thank you to Nutricia who organised a fun packed day at the Think Tank in Birmingham yesterday
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Lower protein ice creams and protein exchange amounts (1g protein = 1 PKU exchange)
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Lower protein ice cream and ice lolly picture booklet now available
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Bear coconut: 1 x 18g bag = 1g protein (1 PKU exchange)
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New low protein snack list - coming soon
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Anita MacDonald retweeted
Annabelle Skidmore@AnnieSkidmore2
Jun 8
‼️TWO PLACES LEFT‼️ the end of July deadline is fast approaching... Anyone 16yrs and over with PKU in the UK interested in PKU research please LISTEN UP… Please share and as always THANK YOU! @macdonj @lewisgough @Aspire5335 @AdamJHerbert91 @VitafriendsPKU
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Improved dietary control results in improvements in indices of white matter structure in adults with phenylketonuria: the ReDAPT study pubmed.ncbi.nlm.nih.gov/4199…

Improved dietary control results in improvements in indices of white matter structure in adults...

This study demonstrated significant increases in the T1w/T2w ratio in PKU patients as they resumed dietary control over a 12-month period. Raw Phe levels were not strongly associated with neuroimag...

pubmed.ncbi.nlm.nih.gov
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Body composition in adults with phenylketonuria: A 5 years follow-up study pubmed.ncbi.nlm.nih.gov/4221…

Body composition in adults with phenylketonuria: A 5 years follow-up study - PubMed

This longitudinal study evaluated body composition in 24 early-treated adults with PKU using Dual-Energy X-ray Absorptiometry (DXA). At baseline, eutrophy, overweight, and obesity were found in 9, 9,...

pubmed.ncbi.nlm.nih.gov
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Real-world experience with sepiapterin in phenylketonuria: A single-center retrospective analysis pubmed.ncbi.nlm.nih.gov/4224…

Real-world experience with sepiapterin in phenylketonuria: A single-center retrospective analysis -...

Real-world experience with sepiapterin demonstrates a 76% response rate in the group of PKU patients tested which included a disproportionate number of sapropterin-responsive subjects. Clinical...

pubmed.ncbi.nlm.nih.gov
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Sepiapterin: From sapropterin to next-generation therapy pubmed.ncbi.nlm.nih.gov/4211…

Sepiapterin: From sapropterin to next-generation therapy - PubMed

Sepiapterin is a naturally occurring pteridine and BH4 precursor that links classic pterin chemistry to tetrahydrobiopterin biology. Tetrahydrobiopterin (BH4; sapropterin) is an essential redox-act...

pubmed.ncbi.nlm.nih.gov
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Oral Health Status of Children and Adolescents With Phenylketonuria: A Case-Control Study pubmed.ncbi.nlm.nih.gov/4201…

Oral Health Status of Children and Adolescents With Phenylketonuria: A Case-Control Study - PubMed

The findings underscore the importance of preventive oral care for PKU patients. A multidisciplinary approach involving dentists from the time of diagnosis of disease is recommended to ensure...

pubmed.ncbi.nlm.nih.gov
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M&S Raspberry Sorbet: low protein/exchange free
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Anita MacDonald retweeted
ESPKU@official_espku
Jun 3
📢 Reminder for PKU professionals: Abstract submissions for the #ESPKUConference2026 Professional Meeting are still open! Share your research and developments in PKU. Submit by 25 July 2026: espku.org/conferences/e-s-pk…
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M&S Mango Sorbet: low protein/exchange free
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Thank you for my beautiful flowers today @Caddick40023484. They are stunning!
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Anita MacDonald retweeted
Bernadette Sheehan Gilroy@sheehangilroy
Jun 1
Honoring Mary and Sheila - 60 years of #NewbornScreening in Ireland. Please support 🙏 gofundme.com/f/honouring-mar…

Donate to Honouring Mary & Sheila — 60 Years of Newborn Screening, organized by Bernadette Gilroy

A Sculpture for Mary Rooney Jones & Sheila Jones Honouring 6… Bernadette Gilroy needs your support for Honouring Mary & Sheila — 60 Years of Newborn Screening

gofundme.com
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ASDA Mandarin in Orange Flavour Jelly: low protein/exchange free/aspartame free/gelatine free
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Harry Brompton's Peach Iced Tea: low protein/exchange free for PKU
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The Coconut Collab Pistachio Pots: 1 pot = exchange free (0.3g protein). 2 pots = 0.5 PKU exchange
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