Day 6: How has the National MPS Society pushed for newborn screenings?
The earlier a child gets diagnosed with MPS/ML, the sooner interventions and resources can be deployed to assist a family, minimize irreparable damage to the body as the syndromes progress, and emotionally prepare for the journey ahead. Early diagnosis is paramount to realizing the best outcomes. The National MPS Society led the charge by submitting the official application and pushing for MPS to be added to newborn screening tests for early diagnosis (both federally and individually by state).
On this map you will see the tremendous results of our hard work in adding MPS I, MPS II, and MPS IV to screen newborns in their respective states. We thank our staff for their diligence in keeping our lawmakers accountable and for the volunteers in our community who have assisted in being the voices for vital newborn screening expansion. For every story we share, we can press our lawmakers to turn this map PURPLE! πππ
#blastoffforacure #MPSAwareness #MPSML #bettertogether #theskyisthelimit #CureSupportAdvocate
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DAY 5οΈβ£: Are the New Kids On The Block more than just an 80βs boy band? π€
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! πππ
To learn more about our Pathways Program click here π 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: Whoβs 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.
Itβs 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. Itβs 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 ππ½ mpssociety.org/support/ πππ
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! πππ
To learn more about the ARC and connect with their stellar programs click here π mpssociety.org/support-adult-resource-committee-2/
#BlastOffForACure #MPSAwareness #MPSML #BetterTogether #TheSkyIsTheLimit #CureSupportAdvocate
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