Maple Syrup Urine Disease (MSUD) Family Support Group

Upcoming State Advocacy Webinar Alert! Date: Thursday, September 12, 2024 Time: 2:00pm - 3:00pm ET The MSUD Family Support Group encourages you to join an important webinar on patient and caregiver engagement in payer decision-making, hosted by Rare Disease Legislative Advocates. Why Attend? Discover how new rules requiring patient and caregiver input in payer decisions could impact rare disease advocates like you! Agenda Highlights: • Why Does Patient and Caregiver Engagement in Payer Decision Making Matter? * Presented by: Jamie Sullivan, The EveryLife Foundation for Rare Diseases • Navigating Payer Engagement - Challenges and Opportunities * Presented by: Jennifer Graff, Innov8 Health Policy • Patient Group Perspective - What Organizations are Doing to Engage Communities * Presented by: Kelly Maynard, Little Hercules Foundation Don't miss out on this opportunity to stay informed and empowered in your advocacy efforts! #MSUD #Advocacy #everylifefoundation Register Now: https://lnkd.in/ehPcK3Xr

Back-to-School Tips for MSUD Parents - As the school year kicks off, it's essential to ensure your child with MSUD is set up for success. From managing low-protein meals to coordinating with school staff, here are some tips to help you navigate the new year: *Plan Nutritious Lunches: Whether you pack lunches or work with the school's meal program, ensure your child has access to low-protein options. Nutricia's Low Protein Guide is a fantastic resource to help you get started: https://lnkd.in/edzV5rWz. *Communicate with School Staff: Set up meetings with your child's teachers, nurse, and cafeteria staff to discuss their specific dietary needs. Make sure everyone is aware of the importance of sticking to the plan. *Involve Your Child: Help your child feel empowered by involving them in the planning process. Let them choose their favorite low-protein snacks and meals. *Know Your Rights: Ensure your child receives the necessary accommodations by discussing options like an IEP, 504 Plan, or Individualized Healthcare Plan with the school. With a bit of preparation and communication, your child can thrive both academically and socially this school year. #MSUD #BackToSchool #LowProteinDiet #Nutricia

🌞 Rise and shine, MSUD community! 🌞 Starting off this beautiful morning with a dose of positivity! "Every day is a new beginning, take a deep breath, smile, and start again." Let's tackle today with enthusiasm and a smile on our faces! 😊 #MorningMotivation #PositiveVibes #NewBeginnings

🌟 Relive the Joy of the 20th MSUD Symposium! 🌟 The smiles, the connections, and the unforgettable moments from our recent symposium are now captured on our website! 😄💙 Whether you were there in person or missed out, you can now experience the warmth and unity of our MSUD community through the photos. Visit https://lnkd.in/ecNWMih3 to see the smiling faces that made this event truly special. And while you're there, don't forget to check out the PowerPoint slides from the event to stay informed about the latest advancements and discussions in the MSUD community. Join us in celebrating the strength and spirit of the MSUD family! ✨ #MSUDSymposium #MSUDCommunity #MSUDFamilySupport

The MSUD Family Support Group is excited to share a call for research proposals! We are seeking innovative research projects focused on: ✨ Identifying the impact of MSUD on the brain and developing therapies to improve neuro-psychological health. ✨ Developing therapies to improve the leucine tolerance of those with MSUD. ✨ Creating a home monitor to assess blood leucine levels. ✨ Establishing gene therapies to repair the defect in amino acid metabolism which causes MSUD. Learn more about our research priorities and how to submit your proposal here: https://lnkd.in/eJANp9PY. Together, let's make strides in improving the lives of those affected by MSUD! #MSUDResearch #CallForProposals #MSUDFamilySupportGroup

📢 Important Update from the MSUD Family Support Group📢 Reckitt Benckiser Group plc ('Reckitt') has reported that on July 9, 2024, a tornado struck its Mount Vernon, Indiana warehouse, causing significant damage. Thankfully, all employees are safe. This warehouse, crucial for the Mead Johnson Nutrition business, is currently not operational, and deliveries have been diverted to other facilities. While short-term disruptions are expected, Reckitt is working to minimize impact through their global supply chain and inventory management. The MSUD Family Support Group have asked for further clarification on how this might affect the MSUD community and will update as details become available. More information can be found here at: https://lnkd.in/emTjZ-Ym #MSUD #CommunityUpdate #StayInformed

International Self-Care Day: Embracing Health & Wellbeing Today, we celebrate the resilience of individuals with MSUD and the dedication of their caregivers. Living with MSUD means daily self-care and careful management. Your strength and commitment inspire us all. To our caregivers—thank you for your love and support. You are the unsung heroes. Let's prioritize our health and wellbeing today. #InternationalSelfCareDay #HealthAndWellbeing #caregiversrock

Are you looking for a meaningful way to make a difference in the lives of individuals and families affected by MSUD? Donate your vehicle and support our mission of providing education, support, and advocacy. Why choose vehicle donation? * It is simple, convenient, and tax-deductible. * It is an eco-friendly way to dispose of unwanted vehicles. * Your donation makes a real difference! Whether it's a car, truck, RV, or boat, you can contribute to a worthy cause. It’s just one click away! Visit https://lnkd.in/eWEGavDg to: 1. Schedule a pickup or drop-off location for your vehicle. 2. Complete the necessary paperwork, including a simple donation form. 3. Receive a tax-deductible receipt for your donation. Together, we can drive positive change and support MSUD families on their journey towards a brighter future. Thank you for your generosity and compassion! #MSUD #VehicleDonation #MakeADifference

Have you filled out the MSUD patient registry? Completing the registry is one thing that you can do TODAY to improve the lives of those with MSUD and their families! Please take a few minutes to register by going to: https://lnkd.in/eZeGTPcH. #MSUD #PatientRegistry #MSUDResearch

🌟 We are thrilled to announce that the 20th MSUD Symposium was a resounding success! 🌟 With rave reviews pouring in from attendees, it's clear that this year's event made a significant impact. From insightful presentations to invaluable networking opportunities, we celebrated our community and advanced our shared mission. A heartfelt thank you to all the speakers, sponsors, volunteers, and attendees who made this event unforgettable. Your participation and enthusiasm drive us forward. Together, we continue to strengthen our support network and spread awareness about MSUD. Stay tuned for updates and highlights from the symposium. Let’s keep the momentum going! 💪 #MSUDSymposium2024 #MSUDFamilySupport #TogetherWeAreStronger