How to put ourselves out of business seems like an odd question for a brand-new nonprofit startup. Maybe not so; a nonprofit aims to fix a problem, and when that problem is fixed, there is no need for the nonprofit.
So what does a world without Eastside EDS look like?
It has educated primary care doctors who can spot the signs early, leading to specialists who understand our unique needs. PTs and OTs account for our unique physiology and help us navigate the world without hurting our bodies to do it.
Local support groups can help when life gets crazy, as it always does. Educational opportunities to learn more about our bodies. Access to the support we need from our doctors without insurance getting in the way.
Resources to help families navigate a loved one's disability. Accessibility options in our day-to-day lives, and more.
How do we get there?
It won't be an easy road, but we start by educating. We will be distributing packets to doctors versed in diagnosing Ehlers-Danlos so that they can provide the patient with some immediate, accessible information about EDS.
At the same time, Doctors who are less versed in diagnosing EDS will get packets of information to help them diagnose patients or provide referrals to medical professionals that can diagnose. Experts will compile this information on EDS and its comorbidities.
In-person training will be developed for Continuing Education (CE) Credits for professional development. PTs will be instructed on seeing the signs of EDS and treating us with the appropriate care.
Support groups will be expanded or formed for the education and advocacy of patients and families. These satellite chapters will be able to provide support to a broader population.
We've begun building each packet that will go to the patients and have the first CE class scheduled with a team of PTs. Our board is expanding, and we've started an advisory committee to help review new and emerging treatments.
A new chapter is being formed in Marysville to help support the population further north. The new branch will help us expand our reach and help even more patients, families, and doctors.
Eastside EDS is poised to do some real good on the way to going out of business. But we need your help.
We will need the help of insurance agents, lawyers, and other professionals on our journey. We will have costs associated with the patient packages and promotional items to spread the word about our services. And we will need resources to reach out and educate as many providers as possible.
You can help. A small donation to Eastside EDS will make a big difference. If you are a provider, consider sponsoring Eastside EDS—contact us for more information.