Hi! It's been a while and I keep forgetting to post things. The most recent thing our family did was to attend Curefest, which is an annual gathering for people affected by pediatric cancer and people who support them. As pediatric cancers are very rare, there is often very little research and funding available, leaving many families stranded for support and care. I learned that oftentimes, the families who are affected end up starting their own companies or nonprofits in order to support their loved ones. Anyway, there are a few things that this community is asking support for:
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Hi! It's been a while and I keep forgetting to post things. The most recent thing our family did was to attend <a href="https://www.curefestusa.org/">Curefest</a>, which is an annual gathering for people affected by pediatric cancer and people who support them. As pediatric cancers are very rare, there is often very little research and funding available, leaving many families stranded for support and care. I learned that oftentimes, the families who are affected end up starting their own companies or nonprofits in order to support their loved ones. Anyway, there are a few things that this community is asking support for:
1. Renewal of the <a href="https://www.congress.gov/bill/113th-congress/house-bill/2019/text?q=%7b%22search%22%3A%5b%22\%22hr2019\%22%22%5d%7d&resultIndex=2">Gabriella Miller 2.0 Kids First Research Act</a> - this is the year it sunsets. This act supports <a href="http://commonfund.nih.gov/KidsFirst"=>funding and data gathering for kids with pediatric cancers and rare diseases</a>. 2. Co-sponsor/support the <a href="https://www.congress.gov/bill/118th-congress/house-bill/3433/actions?q=%7B%22search%22%3A%5B%22H.R.+6%22%5D%2C%22house-committees%22%3A%22all%22%7D&s=1&r=6">Give Kids a Chance Act, HR3433</a>, which provides for <a href="https://www.givekidsachanceact.org/give-kids-a-chance-act">combinations of new cancer drugs for kids with cancer</a>. This one does not cost taxpayers any money.
Both of these have been supported by both Republicans and Democrats, but there is a lack of awareness, as it's not an easy topic to broach for many people. My House Rep Swalwell, has pledged his commitment. So if you are so inclined, please send a message to your legislators!
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timeasmymeasure
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Date: 2023-10-01 03:15 pm (UTC)1. Renewal of the Gabriella Miller 2.0 Kids First Research Act - this is the year it sunsets. This act supports
1. Renewal of the <a href="https://www.congress.gov/bill/113th-congress/house-bill/2019/text?q=%7b%22search%22%3A%5b%22\%22hr2019\%22%22%5d%7d&resultIndex=2">Gabriella Miller 2.0 Kids First Research Act</a> - this is the year it sunsets. This act supports <a href="http://commonfund.nih.gov/KidsFirst"=>funding and data gathering for kids with pediatric cancers and rare diseases</a>.
2. Co-sponsor/support the <a href="https://www.congress.gov/bill/118th-congress/house-bill/3433/actions?q=%7B%22search%22%3A%5B%22H.R.+6%22%5D%2C%22house-committees%22%3A%22all%22%7D&s=1&r=6">Give Kids a Chance Act, HR3433</a>, which provides for <a href="https://www.givekidsachanceact.org/give-kids-a-chance-act">combinations of new cancer drugs for kids with cancer</a>. This one does not cost taxpayers any money.
Both of these have been supported by both Republicans and Democrats, but there is a lack of awareness, as it's not an easy topic to broach for many people. My House Rep Swalwell, has pledged his commitment. So if you are so inclined, please send a message to your legislators!