Maple Syrup Urine Disease (MSUD) Family Support Group

???? Rare Disease Day 2025 ???? On February 28, 2025, we join the global rare disease community in raising awareness for the 300 million people worldwide living with a rare disease—including those affected by Maple Syrup Urine Disease (MSUD). MSUD is a rare, genetic metabolic disorder that requires lifelong medical nutrition therapy and ongoing medical care. By sharing our stories, advocating for medical nutrition coverage, and supporting research, we can make a difference for those living with MSUD and other rare diseases. ?? How can you help? ?? Share this post to spread awareness ?? Wear hashtag#RareDiseaseDay colors (blue, green, pink, & purple) ?? Use your voice to advocate for medical nutrition equity ?? Donate to support the MSUD Family Support Group at https://lnkd.in/eCuPW6_f. Together, we are stronger. ???? #MSUD #RareDiseaseDay #MedicalNutritionEquity #AdvocateForRare

In honor of Rare Disease Week, the EveryLife Foundation has launched a community petition to raise awareness and advocate for policies that protect and support individuals living with rare diseases. Recent executive actions have significantly impacted the rare disease ecosystem, and now is the time for our voices to be heard! We need your support—whether you are an individual with a rare disease, a caregiver, a researcher, a healthcare provider, a friend, a neighbor, or part of any community that cares about rare disease advocacy. Anyone can sign! Petition Deadline: Thursday, February 27, 2025 Delivery to Congress: Friday, February 28, 2025 (Rare Disease Day!) Let’s stand together for MSUD and all rare diseases. Sign the petition and share it far and wide! Sign here: National Rare Disease Community Petition - https://lnkd.in/eZZ6ZK_e or scan the QR code. #RareDiseaseWeek #MSUD #CommunityAdvocacy

Get involved in Rare Disease Day 2025! Mark your calendars for February 28th! Do you know rare diseases are so common, collectively? With more than 10,000 rare conditions, everyone likely knows someone impacted by a rare disease. This #RareDiseaseDay, learn about the vast yet diverse rare community. Learn about ways to show awareness and support for rare diseases like MSUD by visiting: bit.ly/rdd2025 #rarediseaseadvocacy #RareDiseaseDay #MSUDstrong

Why Indirect Research Costs Matter & How You Can Help! The MSUD Family Support Group led the charge in opposing the National Institute of Health’s proposed reduction in indirect research costs—changes that could cut funding for rare disease research, including MSUD. We drafted a letter outlining these concerns, and several allied rare disease organizations endorsed it. **Take action!** We urge the MSUD community to contact your representatives and share this information. Your voice helps protect vital research funding for MSUD and other rare diseases. Read our full advocacy letter at https://lnkd.in/erYBZCDF Want to understand indirect costs and their impact on the MSUD community? Learn more here: https://lnkd.in/eZgqEjxH Together, we drive change! #MSUD #RareDiseaseAdvocacy #speakupforrare

?? Join Us Today for Rare Disease Day Celebration! ?? ?? Happening Today! ?? Time: 12:00 PM EST ?? Location: Virtual Event Don’t miss the chance to hear inspiring stories, connect with the rare disease community, and show your support for MSUD and other rare conditions. Featuring Ashley Bricker, MSUD mom and keynote speaker, as she shares her family’s powerful journey with her son’s diagnosis of classic MSUD. ?? Wear your favorite stripes to show your solidarity and let’s make a difference together! ?? Register now and join us: https://lnkd.in/e6w-MdCy #RareDiseaseDay #ShowYourStripes #TogetherForRare

The Center for Human Genetics Services is celebrating National Rare Disease Week to raise attention and awareness about IEMs. You are invited to join IEM Sessions on February 21, 2025 (Friday) at 1:00 pm EST. In this episode, they will discuss food selectiveness of children with IEM and how this can be addressed. The aim of this webinar is to provide parents and caregivers with adequate knowledge and guidance on properly feeding children with Inborn Errors of Metabolism (IEM). Experts in the field will lead it: ???? ?? Dr. Angeli-Tristel Epetia – Developmental Pediatrician ???? ?? Mr. Richard So – Occupational Therapist #IEMSessionsPH #rarediseases #careforrare

?? Let's Rally Behind Ashley and MSUD! ?? Rare Disease Day Event for Rare PA Date: Friday, February 21, 2025 Time: 12:00 PM EST Location: Virtual Event We’re thrilled to feature Ashley Bricker, MSUD Ambassador and devoted mom, as she shares her family’s inspiring journey and her son Johnny’s life with MSUD. “I’m honored to represent the MSUD community and educate others about this condition that has shaped our family’s life,” says Bricker. Don’t miss this opportunity to raise awareness, connect with the rare disease community, and show your support for MSUD advocacy. Wear your favorite stripes and be part of this meaningful event! Register now: https://lnkd.in/e6AMZXRu #RareDiseaseDay #MSUDSupport #ShowYourStripes

?? Happy Valentine’s Day from the MSUD Family Support Group! Today, we celebrate the love, strength, and unwavering support that makes our MSUD community so special. Whether you're a parent, sibling, friend, caregiver, or someone living with MSUD, your kindness and dedication inspire us every day. ?? This Valentine’s Day, we want to remind you that you are not alone—our community is filled with love, hope, and support for one another. Thank you for being part of our MSUD family. ?? ?? Visit our website at www.msud-support.org for more resources and ways to stay connected. #MSUDStrong #LoveOurCommunity #ValentinesDay ??

?? Advocating for the Rare Disease Community! ?? The MSUD Family Support Group is proud to stand alongside the EveryLife Foundation for Rare Diseases and over 200 leading patient advocacy organizations in urging the 47th President to prioritize policies that support the 30 million Americans living with a rare disease. These recommendations aim to drive meaningful change in research, access to care, and treatment advancements—ensuring a brighter future for individuals and families impacted by rare diseases like MSUD. Read the full letter here: https://lnkd.in/eyCp_Pmn #RareDiseaseAdvocacy #EveryLifeFoundation #MSUD

?? Exciting MSUD Research Update! ?? Dr. Ahrens-Nicklas and her team have published groundbreaking research investigating the effects of MSUD on the brain using a mouse model. This important study enhances our understanding of how MSUD impacts neurological function and could help guide future treatments. The MSUD Family Support Group is proud to have contributed support to this project! Read the abstract here: https://lnkd.in/emmSe4eH #MSUDResearch #RareDisease #MedicalBreakthrough