Looking forward to sharing our love of our #MPSML community as we lead up to May 15th! Show us your love by posting yourself in purple on 5/15! 💜 🚀 💜
#MPSAwareness2024 #BetterTogether #CureSupportAdvocate #ItsAboutTime #BlastOffForACure

★ Just published a new episode of National MPS Society: Our Voices: Grief, Legacy, and Hope with Dr. Klane White. Listen: share.transistor.fm/s/ba7248bb

★ Just published a new episode of National MPS Society: Our Voices: The Journey of a Biochemical Genetic Fellow with Mary Kate LoPiccolo. Listen: share.transistor.fm/s/f64eb0c0

It is International MPS Awareness Day. Our greatest challenge lies ahead of us. Join us at 12:00 p.m. EDT for the premiere of 'Harboring Hope.' youtu.be/XSJiG3tSUmg

#MPSAwareness #HarboringHope #HopeForMPS #CureSupportAdvocate #MPSML #Mucopolysaccharidosis #Mucolipidosis

A HUGE thank you to our tremendous sponsors, our hard working board of directors, and our staff for ensuring the Maritime Gala this weekend was a success! Our hearts are FULL of all the love and generosity given for our families and research efforts!

SPECIAL RELEASE COMING AT 12:00 p.m. EDT!
#MPSAwareness Day 15:
Are you wearing purple today? 📷 We hope so!
Thank you to our MPS/ML families that submitted photos for our 15 days of awareness. Sharing your smiles & your hearts is what International MPS Awareness Day is about

#MPSAwareness Day 14:
How can you show your support for our MPS/ML warriors?
Wear purple tomorrow, and tag us on all your social channels!
📷

Join the Maritime Gala virtually & bid on live auction items tonight! Log in the zoom link (passcode gala) at 7:20 p.m. PST to watch the film premiere of Harboring Hope, linktr.ee/mpssociety to access it all gala!
The Zoom room opens at 7:20 p.m. PST tonight.

#MPSAwareness Day 13:
Want to channel your inner nerd? 🤓
We have our own chief nerd, Matthew Ellinwood, DVM, Ph.D. who is our voice
Learn more about the emerging treatment pharma companies & researchers are discovering that affect our community here mpssociety.org/learn/treatmen…

#MPSAwareness Day 12: How do we support families?
We have several programs that assist families in their rare disease journey from scholarships, DME assistance, medical travel help, conference scholarships, extraordinary experiences help and MORE!
👉🏽mpssociety.org/support/family…

#MPSAwareness Day 10:
How do we raise money for family support & research programs? Our community hosts FUNdraisers and many have made their own Courage Page to honor their loved ones.
Visit this link to look over our Courage Pages: mpssociety.org/give/courage-p…

#ShareYourRare

#MPSAwareness : Day 9

Are you a newly diagnosed family searching for resources, help and answers? Please contact us! Our Pathways program assists families in supporting you every step of the way throughout the first year of your journey with MPS/ML.

mpssociety.org/support/newly-…

We're thrilled to announce the opportunity to donate now and have your gift matched!
Up until our #MPS #MaritimeGala on Saturday, an anonymous Donor will provide a $5,000 donation MATCH challenge to double your impact!

$5,000 Matching Gift + $5,000 New Donor Gifts = $10,000!!

#MPSAwareness : Day 8 -- Do MPS/ML have cures?

No. But we have treatments! ERT is approved for MPS I, II IVA, VI & VII. For some, bone marrow or stem cells transplants can be an option. Gene editing & gene therapy clinical trials show promise.

Our smiles show hope for cures!

#MPSAwareness : Day 7
Do we have fun? 🤔

We sure do! Our next fun event will be our Gala benefiting our family support programs and research funding. Come dance the night away with us! 💃

To purchase tickets and learn more click 👉 linktr.ee/mpssociety

Day 6: What’s the word bird?

The umbrella of MPS/ML diseases have different names depending on the specific combination of enzymes that are missing in the diagnosed individual. To learn more about each disease visit: mpssociety.org/learn/diseases/

#MPSAwarenessDay #ShareYourRare

Thank you to Carter, Adriane & Ava for inspiring this fun fundraiser.

Who wants to see video footage of the staff member getting a pie in the face?

WE DO!! 💜

#ICareYouCareWeCare #MPSAwareness #WearPurpleOnMay15 #WeLoveOurCommunity

Day 5: How is a child diagnosed with MPS or ML?
#MPSML are inherited degenerative #rarediseases . Early diagnosis is vital to stop irreversible damage to cells & organs. We passionately #advocate lawmakers to bolster #newbornscreenings . #Hope
Join us! 👉🏽mpssociety.org/advocate/

You can start bidding on our Gala raffle items! Click on the link to see the amazing items, experiences and trips up for grabs. 💜💎🥂💜

linktr.ee/mpssociety

#MPSGala 2023 #NationalMPSSociety #MPSAwarenessDay2023 #MPSGala #MaritimeGala #MPSML #SilentAuction #HarboringHope

Day 4: How common are MPS & ML?

MPS & ML are #RareDiseases . Current estimates show that in all forms of MPS, 1 baby out of every 25,000 will have MPS. ML current estimate is that 2 or 3 babies per 1,000,000 births have with ML II or ML III.

Meet some of our rare gems 💜👇🏽💜