Spring is finally springing in earnest here in Wisconsin (well, it's supposed to snow on Wednesday but I'm not dwelling on that). Things are greening up, some flowers are appearing. The garlic that Lemon and I planted last fall has begun to sprout. Lemon (and Lime and I) are all still struggling to kick the last dregs of a spring cold, but I think we're all through the worst of it. It is even possible, although I am not in the business of making predictions or plans, that he will be feeling well enough on Friday (when school lets out early for unknown reasons) to finally have that blood draw we've been thinking about for months. Fingers crossed.
This week, I'm going to continue in the fundraising spirit by telling you about another thing that the CF Foundation does that is worthy of your support: advocacy. The CF Foundation is heavily involved in advocating with local and national lawmakers about issues critical to the CF community. You may be aware that healthcare is a topic of constant debate in the US, and that decisions made by state and federal lawmakers can dramatically impact the ability of people with diseases like CF to access the care they need. The CF Foundation advocates relentlessly to preserve programs like Medicare and Medicaid which are critical supports to many in the CF community. In fact, 1/3 of adults and 1/2 of children with CF rely on Medicaid, and the CF Foundation continues to work to maintain and expand the services offered by Medicaid programs.
While the CF Foundation does support a lot of research directly, one of the biggest sponsors of CF research is still the federal government, through agencies like the National Institutes of Health. The Foundation therefore advocates for continued support for the NIH, and for programs that will advance CF research. The CF Foundation also advocates for policies at the Food and Drug Administration that will allow new, effective medications for CF to come to market as quickly as possible.Especially in our current circumstance of not knowing what laws will govern access to healthcare in the future, this type of advocacy work is critical to ensure that people with CF can have access to the care they need to survive. As many of you may remember, about a year ago I went to the Wisconsin state capitol with a group of representatives from the local CF Foundation chapter, to meet state legislators and to advocate for some CF-related agenda items. During that visit, I could clearly see how much groundwork was required, even just to have a dozen people go to the capitol of a medium sized state for a day. Someone had to develop our agenda and talking points,schedule all the meetings with the legislators, and figure out who should go to which meetings. There is no way our visit could have happened at all, or been nearly as impactful, without the groundwork laid by the CF Foundation at the state and local level. I'm pleased to announce that next Wednesday, April 17, I'll be heading back to the state capitol again for another round of advocacy meetings.
So, how about chipping in to help support this important work? You can get to our fundraising page by clicking right here! Thank you so much for your support!