Have you or your child recently been diagnosed with MPS or ML, or is your child undergoing diagnostic testing? We are here to help and can connect you with the information you need.
Join us on September 28-30th just outside of Washington, D.C.! This conference will feature a day of science and advocacy sessions as we meet with the FDA and NIH, and a second day with family conference sessions, care management tracks, and a SPIRIT conference for our adults with MPS or ML (ages 18+). Make plans to come to Maryland to be a part of the event!
This conference will take place at the Hyatt Regency Bethesda Hotel.
Donations to the National MPS Society allow us to support families affected by MPS and ML, fund medical research to find cures for these diseases and keep the public engaged and informed.
Families are the linchpin of our community, and whether it’s financial assistance during a hard time, a special treat for an affected family member or to help make educational dreams come true, we support MPS and ML families across the nation.
We raise money to provide student fellowships and fund research projects. We participate in and host technical conferences that allow researchers to collaborate. We collaborate with other patient support groups and foundations to fund research. Learn about our recent grants and research updates.
LAUNCHING JULY 25, 2023 Dr. White speaks with host Jason Madison about his personal connection with MPS, and…
Dr. Mary Kate LoPiccolo connects with host Jason Madison to discuss medical biochemical genetics and working as a new…
You are invited to join us in Bethesda, Maryland for our 37th Annual Family Conference! Located just outside of…
Please help us find a cure and help those in need.
The 11th Annual Do It Fore Dan Golf Tournament will take place on Friday, October 6th, at the Moccasin Run Golf…
For more information and to register visit our registration page.
Let's send Nolan some love today! 👋
Nolan's mom, Natalie, shared the following with us:
"Nolan was diagnosed with MPS I (Hurler Syndrome) via Newborn Screening in Kentucky in 2022. He was born requiring a month in the NICU from pulmonary hypertension due to a hiatal hernia that required surgical repair. Without Newborn Screening, these issues would’ve been seen as isolated, unaware of the “wholistic picture.” However, Nolan’s MPS I was diagnosed when he was still in the NICU at two weeks old, began treatment for his body at nine weeks old, and began treating his brain at four months old. While Nolan receives physical therapy, he is thriving in his cognitive skills, communication, social-emotional skills, and adaptive skills. Though his MPS journey will present him with future challenges, Nolan’s quality of life has significantly improved due to early diagnosis on Newborn Screening."
September is Newborn Screening Awareness Month, but the need to continue the conversation never ends. Do you have a Newborn Screening story to share, have experience advocating for Newborn Screening in your state, or just want to learn more? Please don't hesitate to reach out to us.
#CureSupportAdvocate #NationalMPSSociety #MPSAwareness #NewbornScreening #Advocate #CapitolHill #RUSP #HopeForMPS
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We hope you can join us at (AT LEAST!) 1️⃣ of our upcoming Crossing Paths events in Denver, Los Angeles, and San Antonio! 😃
We've had such a fun time gathering at our other Crossing Paths events this year, and we are sure these have the potential to be even more exciting!
If you're nearby, please come meet us and bring a friend or two with you! RSVP information is included in the photos below.
#MPSSociety #NationalMPSSociety #PathwaysProgram #CureSupportAdvocate #raredisease #familyday #mpsfamilyday #denverco #Denver #denverchildrensmuseum #sanantonio #sanantoniotx #morganswonderland #lomitapark #losangeles #LA #laca #losangelescalifornia #shareyourrare #hopeformps #crossingpaths
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"Our son Walter was born April 4, 2023, and shortly after, we confirmed his diagnosis of MPS I through Minnesota's newborn screening program. While initially it was devastating to receive such an expected diagnosis, we quickly realized how fortunate we were to be able to move forward with treatment immediately. At five weeks old, we began ERT, and Walter received his new stem cells the day he turned four months old...he's currently doing extremely well! Every single day we are so thankful for the opportunities that newborn screening has given to Walter and our family." - Walter's mom, Elizabeth
We love to celebrate Newborn Screening not just during the month of September, but all throughout the year. As many of us know, early diagnosis leads to early intervention and treatment. Do you have a Newborn Screening story to share? Please email leslie@mpssociety.org or carol@mpssociety.org.
#CureSupportAdvocate #NationalMPSSociety #MPSAwareness #NewbornScreening #Advocate #CapitolHill #RUSP #HopeForMPS
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I hope he will be in good health 💕 , in which hospital you does the stem cells ?
