DAY 5️⃣: Are the New Kids On The Block more than just an 80’s boy band? 🤔
OUR new kids on the block are our heroes! Unlike any other organization, the National MPS Society created a program designed specifically to address the needs and concerns of newly diagnosed families. Receiving a diagnosis of MPS or ML can be daunting. We are here to empathetically make that difficult transition a little bit easier.
Through our industry renowned Pathways Program, our in-house team of licensed social workers Leslie, Carol, and Evelyn personally visit newly diagnosed families in the comfort of their homes or hospital when the family is ready to enlist our support and guidance.
The Pathways program provides families with education and comprehensive support throughout the entire first year of diagnosis. Through innovative ways, we connect members with services, both locally and nationally. We equip and strengthen families to manage care and establish resources needed for their MPS or ML journey. When a child is diagnosed with a rare disease, it can feel lonely sometimes. Through Pathways our mission is to let them know they are not alone. In fact, we are over 2,650 households strong! 💜🚀💜
To learn more about our Pathways Program click here 👉 mpssociety.org/support/members/pathways-program/
#BlastOffForACure #MPSAwareness #MPSML #BetterTogether #TheSkyIsTheLimit #CureSupportAdvocate
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Catching up with a combined Days 3 and 4!
Day 3: Who’s the old kid on the block?
We are! This upcoming year the National MPS Society proudly embarks on our 50th year as the leading voice for our brave community.
Our mission is to serve those impacted by MPS/ML. These are rare genetic diseases with no cures. We support research, provide families with invaluable resources, and work to increase public and professional awareness.
It’s a responsibility and a blessing we do not take lightly. We inclusively bring together our families to provide unbiased scientifically backed information, host joyful events for our families to connect, raise funds for family support programs, fund scholarships, advocate with lawmakers, and provide grants to partnering organizations whose work benefit our journeys in the rare disease space. It’s not rocket science when you remember your why. Our community is our WHY!
To see all the amazing family support programs we offer our members, click here 👉🏽 mpssociety.org/support/ 💜🚀💜
Day 4: What are the MPS/ML adults up to?
Our vibrant Adult Resource Committee (ARC) actively creates social connection and support for adults thriving with MPS/ML. As we continue counting down to May 15th, you'll get to know some of our stellar adults! Their lives are a testament to the advancements in enzyme replacement therapy and connecting our families to renowned specialists to help them live their best lives,.
As a benefit to our MPS/ML adults and their families, we have a wealth of resources on how to navigate educational and career milestones, helpful questions to ask your medical team, and local/national resources to assist adults living with various physical abilities, and much more. May the forth be with you! 💜🚀💜
To learn more about the ARC and connect with their stellar programs click here 👉 mpssociety.org/support-adult-resource-committee-2/
#BlastOffForACure #MPSAwareness #MPSML #BetterTogether #TheSkyIsTheLimit #CureSupportAdvocate
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We interrupt our regularly scheduled MPS Awareness Day facts to bring you some fantastic 🌟BREAKING NEWS🌟out of Oklahoma!
Our state proclamations are coming in! Sheri Wise, Board of Directors, from Oklahoma has secured our first International MPS Awareness Day Proclamation! Thanks Sheri for your dedication to our advocacy and awareness efforts! Thank you to the state of Oklahoma for supporting our cause!
If you’ve submitted a request to your local or state government and they’ve honored your proclamation request, send us a copy and a photo so we can celebrate! If you’ve not requested a proclamation, it’s not too late!!! Help us spread the word across the nation!
#MPSAwareness #MPSAwarenessDay #MPSAwarenessDay2024 #BlastOffForACure #MPSML #BetterTogether #TheSkyIsTheLimit #CureSupportAdvocate #May15
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