Reminder to join this evening's Pathways Support Group Zoom Session!
Tonight the discussion will focus on the genetic aspects frequently encountered by MPS and ML families. Evie Fisher, GC and Lisa Berry, CGC join us for a discussion around carrier status, and are available to answer any genetic questions regarding MPS and ML. Evie is the Society's newest member of the Pathways team, while Lisa is a genetic counselor at Cincinnati Children's and one of the newest National MPS Society Board members.
Don't miss this incredible opportunity! Register now through the link in our bio.
When: Jun 18, 2024 08:00 PM Eastern Time (US and Canada)
#MPSSociety#NationalMPSSociety#PathwaysProgram#CureSupportAdvocate#RareDisease#ShareYourRare#HopeForMPS#CrossingPaths#Genetics#GeneticCounseling#LivingWithMPS#MPSML
📢REMINDER: Weave your way into the future of the National MPS Society simply by donating a t-shirt!
🪡 Quilts will be made from your favorite MPS/ML t-shirts collected through the years to honor and remember the courage shown by all of our MPS and ML warriors.
To participate, mail t-shirt(s) to the following address by June 22:
Tamara Cullere
246 Riechelt Rd.
New Milford, NJ 07646
*Please include a short paragraph about who and what the t-shirt represents, and if the shirt is donated in honor or memory. Pictures are also welcome!
Completed quilts will be raffled off at our Annual Family Conference in Orlando this December.
#BlastOffForACure#BetterTogether#TShirtQuilt#Quilting#MPSML#CureMPS#CureML#CureSupportAdvocate
Our state proclamations keep coming in! Stephanie Cozine, Board of Directors, from Delaware has secured another International MPS Awareness Day Proclamation! Thanks Stephanie for your dedication to our advocacy and awareness efforts! Thank you to the state of Delaware 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
Yelling out a massive THANK YOU to all who rode, shared, gave, and encouraged Team MPS at the @mdbride4rare this year! We're now just under $10,000 from reaching the $30,000 match, and donations are STILL being DOUBLED through June 30!!!
All funds go directly to RESEARCH FOR A CURE! What do you say we each pitch in $50 in honor of our 50th anniversary this year?! (Which really results in $100 with this special opportunity!!! 🎉)
To give, visit our website at mpssociety.org/donate-now/ and select Million Dollar Bike Ride as the designation.
Visit our SmugMug album through the link in our bio for more scenes from the most fun day! 📸
#PennMedMDBR2024#RareDisease#MPSML#NationalMPSSociety#CureSupportAdvocate#RareDiseaseResearch#MDBR#MDBR2024#TeamMPS#HopeForMPS#BlastOffForACure#BetterTogether
You are invited to the next Pathways Support Group Zoom Session!
Register now for an encore presentation of our March discussion, focusing on the genetic aspects frequently encountered by MPS and ML families. Evie Fisher, GC and Lisa Berry, CGC join us for a discussion around carrier status, and are available to answer any genetic questions regarding MPS and ML. Evie is the Society's newest member of the Pathways team, while Lisa is a genetic counselor at Cincinnati Children's and one of the newest National MPS Society Board members.
Don't miss this incredible opportunity! Register now through the link in our bio.
When: Jun 18, 2024 08:00 PM Eastern Time (US and Canada)
#MPSSociety#NationalMPSSociety#PathwaysProgram#CureSupportAdvocate#RareDisease#ShareYourRare#HopeForMPS#CrossingPaths#Genetics#GeneticCounseling#LivingWithMPS#MPSML
Scenes from @mdbride4rare Pt. 1
Riders are still out on the course raising money and awareness for RARE!
THANK YOU to the incredible Team MPS and to each of our generous donors who have provided amazing support for this event. It’s not too late to donate and have your gift MATCHED!
Text 41444 to 2024MDBR to automatically have your gift doubled!!!
#MDBR#TeamMPS#2024MDBR#CureSupportAdvocate#CareAboutRare#BetterTogether#BlastOffForACure
