Sunday, July 22, 2018

We've Got To Do It All

We are a week out from our amazing trip to the North Carolina coast to serve at the Lighthouse Family Retreat. We were able to physically and emotionally serve families living through a childhood cancer diagnosis. It was humbling and fulfilling and so, so good for our hearts and souls. 

This past week we also topped $50,000 raised for Alex's Lemonade Stand Foundation through our TIL Fund in honor of Tillery. All money raised through this fund is used for pediatric brain tumor research grants to find better and safer treatment options and hopefully, ultimately treatment options for all pediatric brain tumors. 

This week I also started doing some research on candidates running in the upcoming elections. Our representative to the House and one of our Senators are retiring so we have some newbies heading to Washington D.C. and we need them to be on board with the STAR Act momentum and to be on our side of healthcare issues. 

As I was reflecting today over these things, I realize it takes all these things. We need to help fund and volunteer with Lighthouse to show families God's love and to help lead them to healing and hope they can find through Christ. We need research for much, much better because our family being a best case scenario in the pediatric brain tumor world after 16 surgeries, 2 years of chemo, and still a remaining tumor the size of a fist in our daughter's brain, seems lacking. And we need politicians to help on a large scale with regulations across this land to help kids get better access to better treatments and to follow up on them into survivorship.

We've got to do it all!

So, we are in the early stages of plans for next year's Tillery's Hustle for Hope 5k to benefit Lighthouse Family Retreat. We are looking at dates and a few possible "upgrades" for next year. We are inviting our friends, family, and any Tillery fans who are interested in serving with us next summer to reach out and let us know. We are building a team to come to the coast and love on some families and be what Jesus calls us to be, His hands and feet. 

And we have to keep fundraising for research and shouting awareness facts. Right now, private donations are the #1 funder of childhood cancer research, not federal funding or pharmaceutical companies, just people with big hearts who open their wallets to the cause. While we hope that the STAR Act will help get more funding directed to childhood cancer and specifically to pediatric brain tumor research, we also witnessed first hand back in April how slowly these things move. There is a lot of work to be done and we will keep rallying our friends and family to fund research because these kids need better now! All that said, we have set up our Alex's Million Mile Team to again dedicate our miles in September to childhood cancer. Here's the link to join our team or make a donation. We are also looking to do a kickoff event on September 1st to do the first mile together. Details to come on that. 

Finally, regardless of your politics, we can probably all agree that childhood cancer is bad and there is more that can be done to help these kids. The STAR Act passed the House and Senate and was signed by the president this year (YAY!). While that's awesome, we still have the hurdle of funding for the STAR Act. In the grand scheme of federal funding and our national budget, our funding request is very insignificant. The STAR Act is not asking for more research funding but just to add a pediatric voice to the decision making table. It also has plans to give better access to treatment for kids across the country and tracking of survivors to get a better snapshot of survivorship and it's challenges. The funding amount is small but still requires votes in the House and Senate at times when there will be seats changing over and new politicians ready to shake up Washington. Our issue is bipartisan but it still takes work to get it to a vote. So we will be reaching out to candidates and asking them to support this vote if/when they make it to Washington. And once the election is over and these newbies are getting settled into their new plush offices, we will be calling and writing them and reminding them of this issue that is so close to our hearts. And come April, the Phillips family will again hit up Capitol Hill to make sure the STAR Act gets the funding it needs. 

We've got to do it all!

BUT, we've got you to help!

Thanks for your continued support. Sorry we are always asking for stuff. But as you are seeing, curing childhood cancer seems to be a big undertaking. Glad you guys are joining us on this mission!

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