<?xml version="1.0" encoding="UTF-8"?><rss xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:atom="http://www.w3.org/2005/Atom" version="2.0"><channel><title><![CDATA[Cockayne Syndrome]]></title><description><![CDATA[Cockayne Syndrome]]></description><link>https://www.cockaynesyndromefoundation.org/blog</link><generator>RSS for Node</generator><lastBuildDate>Wed, 03 Jun 2026 18:07:58 GMT</lastBuildDate><atom:link href="https://www.cockaynesyndromefoundation.org/blog-feed.xml" rel="self" type="application/rss+xml"/><item><title><![CDATA[Care Manuals ]]></title><description><![CDATA[Below is an excerpt from the dedication of the manuals.  Bring these manuals with you to your Dr. appointments, share them with your medical teams.  Please come back and comment if you feel something is missing.  We are currently working on Edition 2 of the Manuals with updated research. Dedication from the 2021 CS Manuals: To all of the parents around the world who have walked this path daily, shedding light and working so feverishly to get information as well as support and advocate for CS...]]></description><link>https://www.cockaynesyndromefoundation.org/post/care-manuals</link><guid isPermaLink="false">69a708b35f34dbe2951dde32</guid><pubDate>Tue, 03 Mar 2026 16:18:04 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_b74892a437a6485cacc3e1e2d13fbae8~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Molly Stark, PT, DPT]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/molly-stark-pt-dpt</link><guid isPermaLink="false">6a0f0eeb8fa816dacc7bcb5d</guid><pubDate>Thu, 21 May 2026 13:58:10 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_eab7f0cc5e9d41468dae6e5d53756504~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Christina Tompkins, RN]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/christina-tompkins-rn</link><guid isPermaLink="false">69efb2bc7cb0726b2da826d3</guid><pubDate>Mon, 27 Apr 2026 19:11:09 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_91651d346d2c42b985d1f2bcde16193d~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Melissa (Missy) Miller ]]></title><description><![CDATA[Board Member]]></description><link>https://www.cockaynesyndromefoundation.org/post/melissa-missy-miller</link><guid isPermaLink="false">69cd3e4fae89b98805dff56c</guid><pubDate>Wed, 01 Apr 2026 15:50:26 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_aba26b09aba84fcb944cc24054409e06~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Lisa Rasmussen, MD]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/lisa-rasmussen-md</link><guid isPermaLink="false">6983a52a131f188df561c096</guid><pubDate>Wed, 04 Feb 2026 20:00:16 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_ca52b29bdb0e4ff3b9e7f5d47b53a034~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Kaitlin Ostrander, MD]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/kaitlin-ostrander-md</link><guid isPermaLink="false">6983a4ed4ef7940ceeef9d8a</guid><pubDate>Wed, 04 Feb 2026 19:58:59 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_ca52b29bdb0e4ff3b9e7f5d47b53a034~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Katherine Anderson, MD]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/katherine-anderson-md</link><guid isPermaLink="false">6983a4baa5b6c1a5c9878c10</guid><pubDate>Wed, 04 Feb 2026 19:57:57 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_ca52b29bdb0e4ff3b9e7f5d47b53a034~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Hunter Saklad]]></title><description><![CDATA[Board Member]]></description><link>https://www.cockaynesyndromefoundation.org/post/hunter-saklad</link><guid isPermaLink="false">6983a38f4ef7940ceeef9b01</guid><pubDate>Wed, 04 Feb 2026 19:53:25 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_b999e9a643774ddc8684ec41ceea9fe9~mv2.jpeg/v1/fit/w_447,h_526,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Amy L. Marini RN, BSN, CHTP]]></title><description><![CDATA[Board Member]]></description><link>https://www.cockaynesyndromefoundation.org/post/amy-l-marini-rn-bsn-chtp</link><guid isPermaLink="false">695d82bdd99f03f79cefd3e9</guid><pubDate>Tue, 06 Jan 2026 21:47:07 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_5393119d4b544cd69589a800910e2cbe~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Christina A. Pacak PhD]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/christina-a-pacak-phd</link><guid isPermaLink="false">695d81a35194fa58188ab971</guid><pubDate>Tue, 06 Jan 2026 21:42:22 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_ec51638b2deb4c389ca04097e648a585~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Andrew E. Mulberg MD, FAAP, CPI]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/andrew-e-mulberg-md-faap-cpi</link><guid isPermaLink="false">695d81295194fa58188ab871</guid><pubDate>Tue, 06 Jan 2026 21:40:25 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_0286bef932f94da188cf943675510fb7~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Peter B. Kang MD, FAAN, FAAP]]></title><description><![CDATA[Medical Advisory Committee]]></description><link>https://www.cockaynesyndromefoundation.org/post/peter-b-kang-md-faan-faap</link><guid isPermaLink="false">695d80be955bbdda690c915f</guid><pubDate>Tue, 06 Jan 2026 21:39:27 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_eb7ab4de7da84474be0e17d88fc36569~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Nikki Herson ]]></title><description><![CDATA[Board Member]]></description><link>https://www.cockaynesyndromefoundation.org/post/nikki-herson-cohen</link><guid isPermaLink="false">695d7f4b5194fa58188ab4ad</guid><pubDate>Tue, 06 Jan 2026 21:32:46 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_05ea315e60134f9fa89bdac14bfbb298~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Meet Bella and Colt ]]></title><description><![CDATA[Family sitting in front of holiday decor ]]></description><link>https://www.cockaynesyndromefoundation.org/post/meet-bella-and-colt</link><guid isPermaLink="false">6945ab23278ff96e54e67708</guid><pubDate>Fri, 19 Dec 2025 21:20:14 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_29c0bfb75f9a4ad0b8143e475077e500~mv2.jpeg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Meet Chase]]></title><description><![CDATA[Chase at just two years old is the baby of the bunch but he rules the house with his smile and sass. He loves playing with his older brothers and is bound and determined to keep up. He is very determined and will not give up on getting what he wants. His memory is excellent and he knows landmarks around town, screaming for us to look as he points. His smile will light up any room and it brightens our family’s life.]]></description><link>https://www.cockaynesyndromefoundation.org/post/meet-chase</link><guid isPermaLink="false">6945a903f882f7cd7d7eb989</guid><pubDate>Fri, 19 Dec 2025 19:36:43 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_8f34c1ca488b477cb54dd8a04d3c5927~mv2.jpeg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Meet Little Zion]]></title><description><![CDATA[Zion is the most fun loving six year old you will ever meet.]]></description><link>https://www.cockaynesyndromefoundation.org/post/meet-little-zion</link><guid isPermaLink="false">6945a853f882f7cd7d7eb803</guid><pubDate>Fri, 19 Dec 2025 19:33:54 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_3395603325bc45e2bf649692e41d3de6~mv2.jpeg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Get to Know Harper ]]></title><description><![CDATA[Meet Harper who was 10 years old and was diagnosed with CS in December 2021.]]></description><link>https://www.cockaynesyndromefoundation.org/post/get-to-know-harper</link><guid isPermaLink="false">6945a740238be523262b6de3</guid><pubDate>Fri, 19 Dec 2025 19:30:57 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_d6e97f6629c842ec9fbd663cf74dc2af~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Meet Little Olive Mae]]></title><description><![CDATA[I would love to share little Olive Mae!!  I’ve attached some pictures but let me know if they don’t work or you want something else!  Meet Olive Mae Marquez, one of the spunkiest, fiercest, and happiest 5-year-olds around. Olive has type 1 Cockayne syndrome, which has affected her in many different ways. But one thing is for sure: she’s been working on overcoming them all! She loves to care for her baby brother Eli (and her many babies), pretend play doctor or kitchen, kick the ball, and go...]]></description><link>https://www.cockaynesyndromefoundation.org/post/meet-little-olive-mae</link><guid isPermaLink="false">6945a6aaf882f7cd7d7eb44e</guid><pubDate>Fri, 19 Dec 2025 19:27:35 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_8bccb1b349444a0dadc040d810367a6a~mv2.jpeg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[A Short Story from Kainen]]></title><description><![CDATA[Kainen is our joyful little man, now 8 months old and almost 9. From the very beginning, he has shown us incredible strength, even through a difficult start to life. Diagnosed with Cockayne Syndrome, he has faced challenges with courage and calmness that inspire everyone around him. Recently, Kainen has gained impressive upper body strength, working hard each week in PT and OT. His head control is remarkable, a true reflection of his determination. He attends Head Start, where he enjoys...]]></description><link>https://www.cockaynesyndromefoundation.org/post/a-short-story-from-kainen</link><guid isPermaLink="false">6945a58d9e93a156638d8256</guid><pubDate>Fri, 19 Dec 2025 19:24:50 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_583bcbb962064b74979d06a16ec2c35e~mv2.png/v1/fit/w_451,h_393,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item><item><title><![CDATA[Geana Dyer]]></title><description><![CDATA[Board Member]]></description><link>https://www.cockaynesyndromefoundation.org/post/geana-dyer</link><guid isPermaLink="false">693c62173fd6b1eb4d06942d</guid><pubDate>Fri, 12 Dec 2025 18:44:51 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/8bd54c_34d9878ab8f74bda85cd0c0b731afe95~mv2.avif/v1/fit/w_566,h_522,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Cockayne Syndrome Foundation</dc:creator></item></channel></rss>