Malan Syndrome Foundation

It’s time for another #MalanMoment to finish out the week! Mary, mom to Rose, couldn’t have said better about what it’s like to be a parent advocate and cheerleader for our Malan syndrome community: “Rose challenges us everyday! Raising a child with Malan syndrome has certainly not been the easiest thing, but we're behind her 1000% in all things. She's changed us as parents; challenged us to be more patient, more creative, better advocates, and way more flexible in the battles we choose to fight because so many of them are just not worth it! She's funny and creative and loves easily and, as a result, is loved easily by anyone who meets her. Even though everyday is hard in some way, she completes our family in ways I could never have imagined and I wouldn't trade that for anything." We feel like this photo of Rose captures her silly and happy spirit perfectly - just what we need going into the weekend! #MalanSyndrome #MalanMoment #MalanSyndromeAwareness

??"Malan Syndrome, Briefly- March edition This month's "Malan Syndrome, Briefly" highlights a significant publication in 2010 by French geneticists, the first to associate NFIX gene variants with a distinct overgrowth syndrome, now known as Malan syndrome. Read more here: https://lnkd.in/ey95g4FD #MalanSyndrome #NFIX

Where in the world do our Malan families live? We’ve put together the flags of countries that our sunflowers bloom from! But we know there are more families out there, and we want to count YOU in! If you haven’t connected with the Malan Syndrome Foundation yet, now is the time! By joining our community, you’ll gain access to resources, research updates, and a network of families who truly understand this journey. ?? Drop a ?? and tell us where you're from! ?? Visit https://lnkd.in/dNVtsCWG to register and be counted! Let’s show the world just how far and wide our Malan family reaches! #MalanSyndrome #SunflowersWorldwide

Congratulations to our global network partners, Asociación Síndrome de Malan Espa?a, on hosting their first Malan Syndrome Congress in Madrid last Friday! This incredible one-day meeting brought together families, researchers, and medical professionals to learn, connect, and advance the understanding of Malan syndrome. We are so proud to stand alongside you on this journey and look forward to continued collaboration! #MalanSyndrome #GlobalCollaboration #StrongerTogether #MalanEspa?a

????Congratulations to Emma Cardwell for winning first place for her poster, Understanding Epilepsy in Individuals with Malan Syndrome, at the NCNS Annual Meeting! Emma is a medical student working with Dr. Senyene Hunter’s Genetic Determinants of Neurological and Developmental Disorders (GDNDD) research group and is helping to lead a study phenotyping neurological features in individuals with Malan syndrome.

The Malan Syndrome Foundation and families came together to celebrate Rare Disease Day with an exciting milestone- the official launch of the Malan Syndrome Initiative at CHOP! From a tour of the facilities to empowering presentations and lunch, the day was nothing short of incredible. We were honored to have representation from 9 Malan families, as well as NORD, RTW Foundation, Dr. Kalish and her outstanding overgrowth research team!! Check out some highlights from this unforgettable day!

Today is Rare Disease Day! ?? My family and I were delighted to be the focus of this post by Department of Health and Social Care, to coincide with #rarediseaseday2025 and their publishing of the next Rare Disease Action Plan for England. For those impacted by or interested in rare disease, professionally or personally, thank you and please keep on plugging. And speaking of plugging: next week I (along with several colleagues at Office of Health Economics) will be running the Kettering Half Marathon. In honour of #rarediseaseday I’m taking the opportunity to see if I can raise some money for the Malan Syndrome Foundation, which has been a huge part of our journey so far. It is run entirely by parent volunteers, on money fundraised by families, and is achieving so much: https://lnkd.in/eRmticKB Thanks for reading and watching!

Today is Rare Disease Day, a day dedicated to spreading awareness for the 25-30 million Americans impacted by rare diseases. On this day, we want to raise awareness about Malan Syndrome, a rare disease that affects many families, including my own. My grandson Henry, who has Malan Syndrome, brings more joy to our lives than we could have imagined. To all the Rare families around the world, we celebrate you today too. ? Knowledge is power, and it's important to educate ourselves and others about rare diseases like Malan Syndrome. The Malan Syndrome Foundation is a great resource to learn more about this condition and how it impacts families. ? Let's continue to spread awareness and support those affected by rare diseases. Together, we can make a difference. ? #rarediseaseday #malansyndromeawareness #knowledgeispower ? Learn more about Malan Syndrome at www.malansyndrome.org.

We’re halfway through the week, friends! & only 2 DAYS AWAY from Rare Disease Day! #DidYouKnow that Malan syndrome was first described by Dr. Valerie Malan in 2010? Just five short years before Malan sunflower Liliana (pictured) from Finland was born in 2015! “Liliana is very social and found it easy to make friends. Liliana loves unicorns and Sonic. She also likes to dance a lot.” Liliana’s mom, Suvi ?? Visit our website to learn more about us: https://lnkd.in/gzagaSnC ?? Donate to our foundation & help us fund critical research for a brighter future for Malan sunflowers like Liliana: https://lnkd.in/ece342Uk #MalanSyndrome #MalanSyndromeAwareness #RDD2025

Happy Monday! We’re kicking off the week leading to Rare Disease Day this Friday with a #DidYouKnow fact covering Malan syndrome and what we’re all about. Today’s sweet face that you see on your screen is of Malan sunflower, Nora! Kids like Nora deserve promising pathways to treatments for Malan syndrome and related disorders. ?? Visit our website to learn more about us: https://lnkd.in/gzagaSnC ?? Donate to our foundation & help us fund critical research for a brighter future for Malan sunflowers like Nora: https://lnkd.in/ece342Uk #MalanSyndrome #MalanSyndromeAwareness #RDD2025