Myositis Support and Understanding Association, Inc. (MSU)

Dear MSU Family, We hope this message finds you in good spirits. Today, we need to address a pressing concern affecting our research community: recent policy changes directing the NIH to limit indirect cost reimbursements to 15% on biomedical grants. This shift poses significant challenges to funding for rare disease research, which is vital for advancing patient-centered discoveries. While the situation may seem daunting, we want to reassure you that our commitment to supporting life-saving research and advocating for our community remains unwavering. In times like these, it’s essential that we unite and take proactive steps together: 1. Stay Informed but Avoid Panic – Knowledge is power. While it’s crucial to stay updated on policy changes, seek balanced information. We’ll continue to provide clear updates regarding the NIH situation. ??Important Note: A federal judge has temporarily paused the NIH reduction following a lawsuit involving 22 states—offering a glimmer of hope amidst the uncertainty. 2. Focus on Advocacy and Action – Now is the time for our voices to resonate! Reach out to your elected representatives, participate in advocacy campaigns, and share your personal stories. Your voice is vital in highlighting the importance of rare disease research funding. Contact your elected o?cials here: https://lnkd.in/e9R7-Dm Quick Link to Senators: https://lnkd.in/eaUVmta Quick Link to Representatives: https://lnkd.in/eK3e3PX 3. Stay Engaged with Our Community – Our strength lies in unity. Let’s support one another, share success stories, and engage in positive conversations. Together, we can counteract the negativity often seen in the media and uplift each other during challenging times. 4. Take Care of Yourself – Above all, we emphasize the importance of self-care. The uncertainty can feel overwhelming, so please take time for yourself, seek support from our community, and remember the progress we’ve made together. Science is resilient, and so are we! Rest assured, MSU is working diligently to keep rare disease research a priority, regardless of funding fluctuations. We are actively engaging with policymakers, research institutions, and advocacy groups to navigate these transitions and safeguard the crucial work we all care about. Thank you for your unwavering dedication to our mission. Together, we will continue to advocate for the needs of the rare disease community and push for progress. Please stay strong, stay connected, and take care of yourselves. ?? #MSU #Advocacy #RareDiseaseResearch #ResearchCommunity #PatientCentered

?? Join Us Today for the #MyositisLIFE: Men with Myositis Clubhouse Support Room! ?? When: 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT ? Frequency: First Monday of the Month (except holidays) This is a dedicated space for men living with myositis to engage in discussions about physical and mental health, address barriers, and share experiences. Regardless of the type of myositis, you’re invited to listen or participate in real-time conversations. ?? For more details, visit: https://lnkd.in/g9uZmiW9 Please note that all Clubhouse Myositis Support rooms are members-only to ensure a safe and secure environment. Getting Started with Clubhouse: Download the Clubhouse app from your mobile app store (available for smartphones and some tablets). Create your free account using your mobile number. Add information to your bio to help others find you. Join the Myositis Support Club! We look forward to having you join us today! #menwithmyositis #myositissupport #myositiswarriors #inflammatorymyopathy #supportcommunity #raredisease #autoimmunedisease #SupportStartsHere

?? Attention Women with Myositis! ?? You are warmly invited to join our Zoom session crafted especially for women living with myositis. This intimate, real-time gathering provides a secure environment to share your challenges, hopes, and experiences with those who truly understand. Together, we’ll explore the emotional journey of living with myositis while nurturing gratitude and connection. ?? Mark Your Calendar: First Monday of Every Month (except holidays) ?? Time: 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT ?? To register, visit: https://lnkd.in/gJ46Q_GH Our sessions remain completely private and are never recorded, ensuring an inclusive space for all women with any type of myositis. Feel free to engage with your camera on or off, share your thoughts, or simply listen. Running late? No worries—jump in whenever you can! Please register to receive your session link by email. We’re excited to connect with you and foster a strong, supportive community! ?? #womenwithmyositis #MSU #myositissupport #myositiswarriors #communitysupport #autoimmunedisease #raredisease #SupportStartsHere

Join us for "From the Heart" support TODAY on Clubhouse—a welcoming space for myositis patients and care partners. If you're feeling alone or just want to connect with those who truly understand, join us to listen or share your experiences with your #myositis family. ?? Starting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT ?? Don’t forget to join the Myositis Support Club on Clubhouse! Our rooms are private and accessible only to members. ?? For more information, visit our event page: [Link in Bio] https://lnkd.in/gdjp9V88 Download the free Clubhouse app from your mobile app store to join in. #myositissupport #myositiswarriors #inflammatorymyopathy #supportcommunity #raredisease #autoimmunedisease #SupportStartsHere

Shop with Purpose: MSU’s New Online Store is Here! ??? ?? Now you can show your support, raise awareness, and help fund vital programs with every purchase ?? Apparel to spread awareness ?? Resources to support your journey ??? Myositis-themed accessories & more! Every item helps support myositis warriors and the fight for better care, research, and advocacy. Check it out today!?? ?? https://lnkd.in/gAY6qAHD #ShopForACause #MyositisAwareness #SupportMSU #MoveForMyositis

??Stay Organized on Your Myositis Journey! Managing myositis can be overwhelming, but MSU’s downloadable Medical Binder is here to help! This resource is designed to keep all your important medical information in one place—making doctor visits, treatments, and daily management easier. ?? Track symptoms & medications ?? Organize test results & appointments ?? Keep emergency contacts handy ?? Advocate for your care with confidence Download your free copy today and take control of your healing journey! ?? https://lnkd.in/gVhW5eMT MSU wants to remind you that you are not alone! We encourage you to check out our other resources, support groups, upcoming events, financial assistance opportunities, and so much more! Visit our website: https://lnkd.in/eCdpY6Kz #MyositisAwareness #myositis #MyositisSupport #MSUmedicalbinder #MyositisLife #MyositisPatients #MyositisCarePartners #MyositisCommunity

Thank You for Moving with Us! ?? On behalf of MSU (Myositis Support and Understanding), we want to send a HUGE thank you to everyone who joined our movement challenge for rare disease awareness! Your participation helped shine a light on Myositis and all rare diseases, proving that when we come together, we are stronger. Every step, stretch, and share made a difference in raising awareness, supporting patients, and pushing for better research and care. Let’s keep the momentum going—because every move matters! ?? #ThankYou #MoveForMyositis #RareDiseaseAwareness #StrongerTogether #MSU #movement #RareDisease #MyositisAwareness #Gratitude

??Mental Health Check-In for the Myositis Community?? Hi Myositis Warriors! How are you really doing today? Living with myositis can be a rollercoaster—physically, emotionally, and mentally. It’s okay to feel tired, overwhelmed, or even frustrated. Your feelings are valid. Today, let’s pause for a moment and check in with ourselves. ?? How’s Your Mind? - Are you feeling hopeful or discouraged? - Is your mind racing, or are you finding moments of peace? - What’s one thought you can let go of today? ??♀? How’s Your Body? - Are you honoring what your body needs—rest, hydration, or gentle movement? - What’s one small act of self-care you can do right now? ?? How’s Your Heart? - Are you feeling connected or isolated? - When was the last time you shared your thoughts with someone who truly listens? - Who can you reach out to today for support? Remember, you don’t have to do this alone. Whether you’re celebrating a win or just surviving the day, this community is here for you ?? Drop a comment below to share how you’re feeling or what’s helping you cope today. Let’s support each other through every step of this journey. ?? With love and understanding, Your MSU famiily To learn more about Myositis Support and Understanding (MSU) please go to our website: https://lnkd.in/eCdpY6Kz We have a FREE membership for the myositis community, including care partners, so make sure to sign up! ?? #mentalhealth #mentalhealthmatters #myositis #myositiscommunity #mentalwellness #myositissupport #myositisawareness

??? Wrapping Up Rare Disease Week on Capitol Hill!?? What an incredible week of advocacy, connection, and action! MSU board member, Lynn Wilson and Executive Director, Elisa Glass, were honored to be in Washington, D.C., raising awareness for Myositis and standing alongside the rare disease community to push for critical policy changes. Throughout the week, they: ? Met with legislators to advocate for increased research funding and better access to care ? Shared powerful personal stories to highlight the real-life impact of Myositis ? Connected with fellow advocates, organizations, and policymakers to strengthen the rare disease movement Our voices were heard through our amazing leaders, but the work doesn’t stop here! Advocacy is ongoing, and we will continue fighting for the rights, research, and recognition that Myositis and other rare diseases deserve. Thank you to everyone who supported, participated, and made this week a success! Let’s keep the momentum going—together, we can make a difference!?? #RareDiseaseWeek #MyositisAwareness #AdvocacyMatters #MakeRareVisible #MSU #CapitolHill #myositis #MyositisPatients #RareDiseaseDay

Inclusion Body Myositis Patient Video support session on Zoom! TODAY and every last Friday of the month! Starting at 5 PM ET / 4 PM CT / 3 PM MT / 2 PM PT? ?For anyone living with #inclusionbodymyositis (IBM) or invite your caregiver, care partner or spouse if you wish. These sessions are private, and a safe space to share your physical and emotional struggles, triumphs, and everything in between. And a place to ask questions to learn from the experiences of other myositis patients.?? ? See details and register to join us at: https://lnkd.in/g-cwbeiW #myositis #myositissupport #raredisease #inflammatorymyopathy #MSU #nonprofit #SupportStartsHere