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  • Writer's pictureTeam Jack

Jack Urban: We Will Win

Jack using his stander
Jack crushing time in his stander

Hi all,

As you’ve seen from social media, Jack continues to dominate all aspects of physical therapy. His strength has improved drastically since his first intensive session with the great people at Peak Therapy in Braintree.

As for the JRU leadership, we may be quiet posting blogs on the website but significant work continues to be accomplished.

We are preparing for a FDA listening session in December, collaborating closely with other families who are participating in the meeting. The goal is to educate the FDA about all aspects of NKH so WHEN a clinical trial is ready, the FDA already has NKH information at their fingertips.

Every donation continues to be devoted to researching gene therapy related to Jack’s mutation. We are also working hand in hand supporting the larger, more dominate mutation that affects 80% of NKH related cases.

So while we are quiet on the blog for now, rest assured everyday JRU leadership works tirelessly to achieve our goals.

We’ve (unofficially) adopted one of the greatest lines in writing as the motto of this foundation.

From Robert Caro’s first biographical journey into the life of LBJ in The Path to Power:

“He had planned and schemed and maneuvered for ten years- had worked for ten years, worked day and night, weekday and weekend- had done EVERYTHING. And for ten years, he had won.
He relaxed for one day. And he had lost. “

There’s no relaxing for the JRU Foundation.

We will win.

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