"Children used to come to our events with visible signs of disease progression, like joint damage or in wheel chairs, because there were no effective treatment options for kids at the time," a parent advocate shared with our family.
Today, I’m grateful that we have more options to treat Juvenile Arthritis, promoting healthy bone development and better disease management. Thank you, Arthritis Foundation, parents, and advocates.
Arthritis is the most prevalent form of disability in the U.S. Managing arthritis requires comprehensive care and accommodations to improve quality of life.
For caregivers, especially those caring for children with JA, the challenges can be even more demanding as we balance our child's health needs, argue with the insurance company or pharmacy, have limited access to pediatric rheumatologists, need to take time off for healthcare appointments, and navigate the complexities of an invisible disease.
It was an eye-opening reminder that we’re not alone; we have a supportive community and allies standing with us.
We would all go to the moon and back to find a cure for JA.
The summit highlighted the importance of identity-centered groups for sharing experiences and fostering a sense of belonging. I also witnessed an incredible amount of advocacy work focused on ensuring our children have access to the best treatments available.
It was powerful to observe a parent-led summit featuring events, networking opportunities, sibling support and education, and childcare, all designed to support families navigating this journey together.
I’m so grateful for the work leaders and parents have done to my sure my child has access to treatments that will support her growth and allow her to be a kid and become a compassionate and strong adult.
This work has encompassed a range of efforts aimed at improving medical care, increasing public awareness, securing funding for research, advocating for health insurance and legislative reforms, and professional training for pediatricians and adult rheumatologists who treat children.
It's powerful to see when a group of #allies and how their advocacy efforts over the past four decades have significantly improved the lives of children with Juvenile Arthritis and their families, leading to better treatments, greater public awareness, and stronger support networks.
#Allyship
#Disability
#Inclusion
#Accessibility
#KidsGetArthritisToo
#Caregivers
#Leadership
#JuvenileArthritis
#JAFamilySummit
? Hello?
?
I'm Dr. Adriana B. Rojas, a bilingual IDEA Principal Consultant, and I'm deeply passionate about applying an outcome and data-driven approach, all while emphasizing personal growth and our shared humanity.
My mission is to collaborate with you on innovative and strategic projects, supporting your pursuit of IDEA (Inclusion, Diversity, Equity, and Accessibility) goals and desired outcomes.
?
?? Schedule a free 30-minute strategy consultation:?https://lnkd.in/e28Ui5V4
