Happy International MPS Awareness Day!
Today, we raise awareness on our rare community to bring support and to find a for all families impacted by MPS and ML, and most importantly to honor, remember and celebrate all those who have lost their battles.
I’m participating in Advocacy Day - I’ll be spending my day talking with our state legislators 💜
#MPSAwarenessDay#MPSAwarenessDay2024#Advocate#Support#Cure
2023, you were unexpected in so many ways. There were moments that shocked me to my core and emotionally drained me. And the true is that there were many days where I couldn’t wait for you to be over. Yet, as I look back on the year, I am reminded that despite the bad there were many good moments. These are some of the moments and people who brought me joy this year. Who reminded me to always look for the moments of joys 💫 2024, I’m ready for you and ALL your moments of joys ✨
Happy Rare Disease Day 2023 💜
When I was diagnosed with MPS VI at the age 5, I've never would have imagine the challenges and struggles of living with a #raredisease would entail.
While having a #raredisease isn't easy, along the way I've met incredible individuals and families who not only understand this #rare life journey, but who have taught me to a fierce advocate for our community. I am thankful to be a part of such a courageous community!
Head to @rarediseasedayofficial to learn more about rare diseases.
I’m so excited and honored to announced that I’ve been accepted to be a part of the National MPS Society (@mpssociety )’s Board of Directors!
Throughout the years the National MPS Society has provided me with invaluable support in my journey with MPS VI as well as numerous opportunities for me to connect and make life-long friendships with individuals and families that understand the challenges of living with a rare condition.
I can’t wait to work alongside incredible individuals to continue to advocate and support all families living with MPS and ML, but most importantly to finally finding cures for all MPS and ML diseases! I hope to finally break the cultural barriers impacting our community so that ALL families can have equal access to resources and support.
Happy birthday @jroc05 🎉so blessed to have you as my big brother! Proud of you and all your accomplishments! Cheers to a new year of grow, lessons and adventures! Love you 💕
Goodbye 2022. You were an incredibly, amazing year full of wonderful surprises, lessons and moments! Thank you, thank you, thank you! Can’t wait to see what 2023 has in store for me!
This past week was beyond incredible! A rollercoaster of emotions! I still can’t believe that my post went viral on @linkedin and that I appeared on both National and International TV 😅 Thank you @ediciondigitalunivision & @enmariasela for allowing me the opportunity of sharing my story! I’m humbled and overwhelmed with the outpouring of love and support! For me the highlight of the week was seeing my story being shared by Dominican media outlets 🇩🇴 and knowing that my story resonated with so many ✨
