I can confirm I will be meeting with California Congressman (former CA Lt. Governor) John Garamendi next week in D.C and possibly other members of Congress and the Senate. Will be talking about the R4R and current Rare Disease policy and legislation. I am in contact with the White House and the D.C. Mayor’s office and more. I will be receiving a proclamation from the Governor of Maryland, and a Resolution from the County of Baltimore this week.
Content with the progress so far. I start dedicating days soon to individuals, putting my lists together. The running is actually the easy part of it all. This is a massive endeavor with much work still to do. The running and daily logistics and media are paramount.
Meanwhile, the Luminous Pictures -Run for Rare documentary team is either with me or in nearby towns/States capturing the story and RARE families. Lots of moving parts. A logistical mountain to climb but we thrive and adapt to all situations and variables. Just met with R4R Director/Producer Ezio Lucido for our nightly meeting. Encouraged by all that is happening.
Together, we are motivated and dedicated to making RARE right, advocating for the 30 Million Americans. Everyone is in good spirits and planning for tomorrow. Thankful for all of your support. Stay tuned. This is only Day 9 of 127, the story gets bigger. Cant tell all the secrets just yet. Goodnight.