Posted in Awareness

Rare Week In Washington DC

I had an amazing experience participating in Rare Week in Washington DC.

I arrived Feb 25 and left Feb 29, 2020.

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

I arrived empowered and I left empowered and my advocacy on on fire and I was exhausted and yet rejuvenated all at the same time.

This was my first time on Capitol Hill and it will not be my last.

I met so many amazing people.

I also participated in a focus group which was the main reason why I went but the opportunity cane to go a few days earlier and I took advantage of that time.

hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates and to foster relationships within the community.

900 RARE DISEASE ADVOCATES

393 MEETINGS WITH CONGRESS

227 PATIENT ORGANIZATIONS

1 AMAZING RARE DISEASE WEEK!

I spoke on Capitol Hill, Met one of my Senators for Ohio.

Spoke up about Osteonecrosis and how we need better treatment options like prp injections,stem cell injections, clinical trials and getting new treatments covered by insurance also I discussed osteoarthritis and how it can be debilitating as well.

I passed out 200 copies of my Osteonecrosis booklet to people on Capitol Hill thanked several for issuing proclamations for November 29 becoming Osteonecrosis Awareness Day in many States my goal Is all states.

I then toured that amazing and beautiful town of our nation’s capital.

Took a night tour that was amazing until a lady tripped and grabbed me causing me also to go down.

Blasted my knee and it looks like a water balloon but thank God it’s not broken.

Rare Week Capitol Hill February 2020

I had an amazing experience and I am so grateful I got the opportunity to go and I look for to being in Washington DC more often.