Thursday, April 25, 2013

HEALTH ACTIVIST WRITER'S CHALLENGE DAY 5 (goals for your advocacy)

Today’s Prompts:
  • “If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?

   I have actually put a great deal of thought into this answer (one of the reason's this post is so late today in addition to a fever episode earlier) I actually have two different answers because I really couldn't decide between the two of them and I feel they are equally important and attacking advocacy from two completely different angles.

First off the need for awareness is one of the biggest needs for Still's disease...we will never get the research dollars unless people know we exist and that we NEED the research so One of my goals is to be able to set up a more aggressive approach, similar to a marketing campaign. Getting us a "ribbon" that may seem so small and trivial to many of you reading this, but really this is a topic often discussed in various support groups...we WANT a ribbon, because the ribbon does create awareness even if it doses seem trivial...not to mention the "feel good" aspect of having a ribbon of our would be something that showed our unity and our cause to the world, something we could point to and say "this is for my AOSD" or something we could give friends and family members to wear  to show their support...think of all the ribbons that exist, and how often you see can even buy them at the gas stations...the visibility we could gain would be tremendous...we just need to come together as a group and "design" one and then register it to make it official...
Along the same lines (and still in the same "marketing" plan" would be to organize a fundraiser for Still's ...think about it there are cancer walk/runs, lupus walks, arthritis walks, even benefit walks for depression...we need to come up with some kind of benefit/fundraiser that could be held at different locations to fund the other much needed activities to get us in the national spotlight, help patients with medical costs, and cover the costs of the "marketing plan" to some degree...right now 100% of the International Still's Foundation is funded by private donations (mostly from those of us with Still's) with no way to "raise" funds other than just generous donations and T shirt sells...again this may seem like a small trivial thing, but for a rare disease that no one knows about a little "media attention" would go a very long way

The second part of my answer would be long term goal of getting Still's research funded on a large scale national level...this will never happen unless WE push it to happen by lobbying for it ourselves i Washington. I will admit I have no idea of HOW to do this, but I do have a contact or two that are involved in medical lobbying and legislature...I do intend to use those contacts when the time comes and hope than in my lifetime the FDA approves a medication specifically designed for Still's because we are different, lupus meds help one aspect of this disease, RA meds another, cancer meds yet another...BUT it would be more cost effective as well as better for the patients to take one medication designed to treat THIS disease and it's many aspects....This is my biggest dream, it may seem like an impossible goal but it is MY goal and although I can't do it by myself I can't do it by myself no matter how hard I try hopefully the right person/organization/or pharmaceutical company will eventually learn about us from the "marketing" plans I have discussed above. One thing is certain if ever Still's gets "it's day" in Washington I will certainly be there in person to show my support and tell my story and I hope that you will all join me and together we can make this dream a reality...maybe not today, next year, or in the next 5 years BUT this disease is here forever and someone, somewhere has to be the first to stand up and say "it's time we got the medical research and medications we deserve" I am OK being that someone...

1 comment:

  1. Kimberlee, I am enjoying reading your blog posts. You are doing an excellent job of talking about what life with Still's is like. Thank You for doing this. You are doing a great job representing those of us with Still's!