go ahead and call me unpatriotic - I don't care.
I have been off of social for sanity. But not today. Today I could not stay quiet. I posted this on FB...
I befriended a family from the East coast who temporarily moved in next door to us last year. They transplanted so that their son, Jax, could access care at Stanford in a clinical trial for a rare disease. The family spent their days going back and forth to treatment, while working remotely.
By the time summer arrived, the Mr. Softie truck was a fan favorite for Jax and his little brother. Each time I heard the tune greeting us from down the street, I watched in pure delight, as the boys waved it down, and thanked the Mr. Softie driver, who implemented a stop just for these two cuties.
Do you know what I just learned from Missy Kuban Ramirez, Jax's mama?
She just shared that the next phases of her son’s medical care have been put on hold due to federal funding cuts. Her son has a rare disease which depends on clinical trials and research. My rage left me mute, boiling up in my belly like a furnace without an OFF button. Beneath the fury is despair. A chasm of helplessness. Questions that will never be answered by people in ivory towers. Hot tears welled up from a bottomless pit and fell down my cheeks in a silent prayer.
Meanwhile, you know what Missy and her family did this weekend? They went to the tidepools off of Highway 1. With the sun shining. Curiosity expanding. Giving thanks for the things that are never promised. They are heading back East this week, without answers and a pocket full of hope.
They have made a conscious decision to celebrate this moment. This life. And I learned a lot from that.
For those of you who voted for the current administration, I just want to know one thing...as this country literally gets turned upside down in ALL ways, is your America Great, yet?
As you contemplate America's future for those that may look different than you (code for: non-white), practice different faiths (or GOD FORBID, no faith at all) identify as non-binary / trans / gay, are trying to attain a college degree (with the help of federal grants), or are disabled whose funding may be stripped away from the systems that support them (schools)...were his blatant lies of MAHA/MAGA worth it?
And for those who claim to be Christians: CHECK YOUR FACTS ON WHO THE JC HUNG WITH WHILE HE WALKED THIS PLANET. Because it wasn't people like Donald Trump, JD Vance or Elon Musk.
Until his decisions affect you personally, I have a feeling you will stay silent. Not me - I am WOKE.
Peace Out
A message from Missy:
WONDERING HOW TO HELP: Fill this for out in honor of Jax. MASSIVE CUTS to Stanford University have occurred. These simply cannot impact Phase 2 and 3 of of his clinical trial. Its his only hope.
I beg you to take action. Like his life depends on it.
Congress is considering cutting critical funding to NIH and FDA, two institutions essential for researching and approving new rare disease treatments. Ask your representatives to protect this funding, here: https://bit.ly/3Ft0Q5E
With less than 5% of rare diseases having approved treatments, now is not the time to stop investing in this work. Thank you for using your voice.
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