Jon Rodis shared the following message with us:
We are so very excited to introduce the Connective Tissue Coalition!
After years of combined experience in patient advocacy, medical outreach, and public awareness, our members have come together under the leadership of Jon Rodis and our multi-talented board to realize a long-held dream: strength through unity as the Connective Tissue Coalition.
We have created a Coalition that is gathered to fulfill a crucial purpose: to elevate the quality of life of all people with Connective Tissue Disorders by making education, advocacy, and empowerment our singular goal.
We will advance our purpose by creating sustainable progress in both progressive research and powerful initiatives at a pace that should be the norm in healthcare, not the exception. And sustainability will be
the natural result of our core commitment that 100% of our funding will go toward these projects.
We will
attain our objective by focusing on our cohesion. Because when we combine the creativity and expertise of our most esteemed scientists, medical professionals, patients, allies and families, we will make those long-necessary breakthroughs and achieve what was once unthinkable: a cure.
Among our current projects:
- Initiatives designed to help those seeking US Federal Disability and other assistance
- Awareness of an often-overlooked yet common and urgent issue that affects generations of connective tissue families
- And perhaps most exciting, we’ll soon be announcing a major research project– watch this space!
Alone, our conditions may seem at times insurmountable, and our aspirations held back by bodies that just won’t . But in the Connective Tissue Coalition, our members are the connective tissue that galvanize us.
And together, we will.
https://www.connectivetissuecoalition.org/
