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#pku

2 posts2 participants0 posts today
poconnor<p>Spring news for subscribers: <br>🎉new UK patient guides, <br>🏹updates on the NSPKU conference and activity weekend, <br>🔍plus insights into brain injury rehab. </p><p>📖📚Also, my Low Phe ABC book is almost here! </p><p>➡️ Subscribe for more, get a FREE book, &amp; join the conversation. </p><p><a href="https://www.pigpen.page/march-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">pigpen.page/march-2025/</span><span class="invisible"></span></a> </p><p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LowProtein</span></a> <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BrainInjury</span></a> <a href="https://pkutalk.com/tags/NewBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NewBook</span></a></p>
SciPost Physics<p>New <a href="https://scipost.social/tags/openaccess" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>openaccess</span></a> publication <a href="https://scipost.social/tags/SciPost" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SciPost</span></a> <a href="https://scipost.social/tags/Physics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Physics</span></a> Core</p><p>Phase transitions in quantum dot-Majorana zero mode coupling systems</p><p>Yue Mao, Qing-Feng Sun<br>SciPost Phys. Core 8, 031 (2025)<br><a href="https://scipost.org/SciPostPhysCore.8.1.031" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">scipost.org/SciPostPhysCore.8.</span><span class="invisible">1.031</span></a></p><p><a href="https://scipost.social/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://scipost.social/tags/HefeiNationalLaboratory" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HefeiNationalLaboratory</span></a></p>
Mark Maguire<p>Metabolic.ie PDF of handy phrases in a few European languages for folks with PKU when we’re travelling out of the anglophone bubble. <a href="https://mastodon.ie/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://mastodon.ie/tags/MetabolicDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MetabolicDisease</span></a> <a href="https://mastodon.ie/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://mastodon.ie/tags/PhenylKetoneUrea" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PhenylKetoneUrea</span></a><br><a href="https://metabolic.ie/wp-content/uploads/2024/10/PKU-Translations-2.pdf?fbclid=PAZXh0bgNhZW0CMTEAAaY_t7wtD10TVhLdLXlAfPc_qqXAFEs1jRtD1im9hd9_9t4zqvRN8tMiNsc_aem_Ck5Ibj3eyH_SF8VeA5bSXw" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">metabolic.ie/wp-content/upload</span><span class="invisible">s/2024/10/PKU-Translations-2.pdf?fbclid=PAZXh0bgNhZW0CMTEAAaY_t7wtD10TVhLdLXlAfPc_qqXAFEs1jRtD1im9hd9_9t4zqvRN8tMiNsc_aem_Ck5Ibj3eyH_SF8VeA5bSXw</span></a></p>
PCU Blogue<p>In average, 80% of my traffic now comes from email. Facebook rarely reach 30%. Even my recent most popular article (the one about the new treatment) only accounted for 39% of the traffic while email was still 49%.</p><p>First, I'm happy to see this because that means that more members of the <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> community sees that they have total control when they subscribe directly to my blog (vs the <a href="https://pkutalk.com/tags/Meta" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Meta</span></a> algorithm). </p><p>Second, that means that my days of sharing links on <a href="https://pkutalk.com/tags/Facebook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Facebook</span></a> are numbered. <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
J.J.Brown<p>Thrilled to share The Wishing Shelf Book Awards in the UK listed my new book among their 🔥 finalists 🔥 for the year's adult nonfiction prize today: <a href="https://www.thewsa.co.uk/finalists2024/#Category_6" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thewsa.co.uk/finalists2024/#Ca</span><span class="invisible">tegory_6</span></a> "When the Baby Is Not OK: Hopes &amp; Genes" <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/Book" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Book</span></a> <a href="https://pkutalk.com/tags/Bookstodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Bookstodon</span></a></p>
SciPost Physics<p>New <a href="https://scipost.social/tags/openaccess" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>openaccess</span></a> publication <a href="https://scipost.social/tags/SciPost" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SciPost</span></a> <a href="https://scipost.social/tags/Physics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Physics</span></a></p><p>Higher-matter and Landau-Ginzburg theory of higher-group symmetries</p><p>Ruizhi Liu, Ran Luo, Yi-Nan Wang<br>SciPost Phys. 18, 052 (2025)<br><a href="https://scipost.org/SciPostPhys.18.2.052" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">scipost.org/SciPostPhys.18.2.0</span><span class="invisible">52</span></a></p><p><a href="https://scipost.social/tags/PI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PI</span></a> <a href="https://scipost.social/tags/DalhousieUniversity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DalhousieUniversity</span></a> <a href="https://scipost.social/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a><br><a href="https://scipost.social/tags/ChinaAssociationScienceTechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChinaAssociationScienceTechnology</span></a> <a href="https://scipost.social/tags/MCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCU</span></a></p>
Damian J.<p>Just had my first <a href="https://mcr.wtf/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> supplement in over 30 years.</p><p>Vitaflo PKU Sphere 20 - lemon flavour</p><p>Verdict:<br>About 1,000 times better than the aminogran I had as a kid, but still an interesting flavour journey.</p><p><a href="https://mcr.wtf/tags/pkudiet" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pkudiet</span></a></p>
J.J.Brown<p>Today my book is out in hardcover + an interview about writing it up on YouTube, with my daughter who has PKU - have a look -&gt; <a href="https://www.youtube.com/watch?v=uF2HvBIH41s" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=uF2HvBIH41</span><span class="invisible">s</span></a> When the Baby Is Not OK: Hopes &amp; Genes <a href="https://pkutalk.com/tags/Bookstodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Bookstodon</span></a> <a href="https://pkutalk.com/tags/books" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>books</span></a> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> (ebooks, paperbacks publishing Feb 11th)</p>
poconnor<p>Hot off the press! I've just finished reading advance copy of this new PKU book.</p><p>I thought it was a powerful and unflinching memoir interwoven with a wide-ranging social history, offering a compelling examination of motherhood, medical care, and genetic heritage through the lens of PKU.</p><p>⭐⭐⭐⭐⭐ - more at <a href="https://buff.ly/40OVbxQ" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">buff.ly/40OVbxQ</span><span class="invisible"></span></a> </p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/rarediseaseawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>rarediseaseawareness</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://pkutalk.com/tags/newbook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>newbook</span></a> <a href="https://pkutalk.com/tags/bookreview%EF%B8%8F" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bookreview️</span></a></p>
Soheb<p>Mogo chips with normal chips and vegan mayonnaise.</p><p>2 PKU exchanges and utterly delicious 😋 </p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenyketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenyketonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a> <a href="https://pkutalk.com/tags/lowprotein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>lowprotein</span></a> <a href="https://pkutalk.com/tags/lowproteinfood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>lowproteinfood</span></a> <a href="https://pkutalk.com/tags/food" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>food</span></a></p>
Soheb<p>Did my blood test this morning! Nearly forgot as well 🤦‍♂️</p><p>It was absolutely freezing this morning so I had to use two fingers to do the blood test (oops) - I hope it still counts!</p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a></p>
PCU Blogue<p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> | Avez-vous faim? 😋<br>Abonnez-vous directement au blogue pour combattre l'algorithme de Meta et recevoir mes articles directement dans votre boîte de courriel.<br>*<br>Are you hungry? 😋<br>Subscribe directly to the blog to fight the Meta algorithm and receive my articles directly in your email inbox.</p><p><a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylcetonurie</span></a></p><p><a href="https://www.phenylcetonurie.ca/p/la-salade-de-poulet-ultime-faible?r=47am9s&amp;utm_campaign=post&amp;utm_medium=web&amp;showWelcomeOnShare=false" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">phenylcetonurie.ca/p/la-salade</span><span class="invisible">-de-poulet-ultime-faible?r=47am9s&amp;utm_campaign=post&amp;utm_medium=web&amp;showWelcomeOnShare=false</span></a></p>
Soheb<p>Hey all, <span class="h-card" translate="no"><a href="https://pkutalk.com/@jjunebrown" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>jjunebrown</span></a></span> has released a new memoir book called "When the baby is *not* ok - Hopes &amp; Genes"</p><p>US folks can get it here: <a href="https://www.amazon.com/dp/B0DT7MZ7YL" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">amazon.com/dp/B0DT7MZ7YL</span><span class="invisible"></span></a></p><p>OG Post: <a href="https://pkutalk.com/@jjunebrown/113866689192925307" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pkutalk.com/@jjunebrown/113866</span><span class="invisible">689192925307</span></a></p><p><a href="https://pkutalk.com/tags/books" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>books</span></a> <a href="https://pkutalk.com/tags/bookstodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bookstodon</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a> <a href="https://pkutalk.com/tags/reading" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>reading</span></a> <a href="https://pkutalk.com/tags/kindle" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>kindle</span></a></p>
J.J.Brown<p>A memoir of pregnancy, childbirth + raising my 2 daughters with PKU is up for preorder now. Kindle, paperback + hardcover release in Feb, here's the Kindle link: <a href="https://www.amazon.com/dp/B0DT7MZ7YL" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">amazon.com/dp/B0DT7MZ7YL</span><span class="invisible"></span></a> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/books" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>books</span></a></p>
Soheb<p>I'm back, folks 😎</p><p><a href="https://pkutalk.com/tags/bloodspot" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bloodspot</span></a> <a href="https://pkutalk.com/tags/blood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>blood</span></a> <a href="https://pkutalk.com/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>health</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a></p>
Soheb<p>I'm back, folks 😎 <a href="https://bsky.app/search?q=%23bloodspot" rel="nofollow noopener noreferrer" target="_blank">#bloodspot</a> <a href="https://bsky.app/search?q=%23blood" rel="nofollow noopener noreferrer" target="_blank">#blood</a> <a href="https://bsky.app/search?q=%23health" rel="nofollow noopener noreferrer" target="_blank">#health</a> <a href="https://bsky.app/search?q=%23pku" rel="nofollow noopener noreferrer" target="_blank">#pku</a> <a href="https://bsky.app/search?q=%23phenylketonuria" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://bsky.app/search?q=%23pcu" rel="nofollow noopener noreferrer" target="_blank">#pcu</a> <a href="https://bsky.app/search?q=%23phenylcetonurie" rel="nofollow noopener noreferrer" target="_blank">#phenylcetonurie</a></p>
Soheb<p>Stir fry rice with mushrooms and onions... 🤤</p><p>Used Mevalia rice as it's the closest I can get to tasting normal rice, and frozen garlic and ginger, mushrooms and onions for quicker prep.</p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a></p>
Soheb<p>Our great PKU friend <span class="h-card" translate="no"><a href="https://pkutalk.com/@poconnor" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>poconnor</span></a></span> has done another newsletter about PKU food.</p><p>Give it a read here</p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylektonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylektonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a></p><p><a href="https://www.pigpen.page/ginger-and-dark-chocolate-cookies/?ref=pigpen-pku-brain-injury-mental-health-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">pigpen.page/ginger-and-dark-ch</span><span class="invisible">ocolate-cookies/?ref=pigpen-pku-brain-injury-mental-health-newsletter</span></a></p>
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