Nancy Goodman

#pediatricvouchers, #RACE4ChildrenAct, #MikaelaNaylonGiveKidsaChanceAct. Mom to Ben 23, Sarah 15, & Jacob forever 10

[Nancy Goodman @NancyFGoodman]

My remarks I made at Baylor College of Medicine last week.

On behalf of all the kids with cancer and their families, I want to thank Baylor College of Medicine for this honor.

Admiral McRaven once gave a famous commencement speech at Texas A&M . His #1 piece of advice: make your bed. If you make your bed every morning, you will have accomplished something and set yourself up for success the rest of the day.

I’m don't have anything that profound to share with you, but I do want to share my story.

It began when my eight-year-old, Jacob, woke up with a headache and nausea. He was diagnosed with a pediatric cancer. Jacob’s treatment was hard. He suffered. And despite 23 months of treatment, Jacob died when he was 10.

Today is actually Jacob’s birthday. He would be 28. Jacob loved science. Perhaps he would be sitting here with you, today, graduating from Baylor. Perhaps instead of speaking to you and receiving this honor, I would be a parent in the audience.

So the day after Jacob died, I open my laptop on the dining room table and founded Kids v Cancer to change the landscape of pediatric cancer drug development.

Every step has been challenging, but thanks to kids with cancer and their families, we have made real progress. We developed a market-based program, a priority review voucher, which incentivized companies to invest in pediatric drug development when the economics alone did not justify doing so. Now, 15% of drugs newly approved by the FDA have received priority review voucher incentive.And we passed a law that required companies that are testing promising drugs in adults to also test them in kids who might benefit.

As you begin your medical career, you’ll bear witness to your patients’ tragedies. And one day, you will face a tragedy of your own. When that happens, I hope you’ll remember the following: Life isn’t about avoiding adversity; you can’t. Life is about how you deal with it.

There is no more inspiring a person than a kid with cancer. I want to tell you about Mikaela Naylon. Mikaela said,

"The thought of making it to the end of the day isn't in the cards. I’m still taking chemo in hopes of killing this thing that keeps taking everything away from me. I am 16. I have dreams and aspirations, and I want to make sure that others receive a better standard of care."

Mikaela was persuasive. She moved Senator Chuck Schumer of New York and Congressman Mike McCaul here in Texas. In the end, Congress named the bill the Mikaela Naylon Give Kids a Chance Act and passed it unanimously 4 months after she died. It will give countless kids a real chance of surviving and living a better life.

So, when you’re done making your bed, pick yourself up, stare down adversity, and remember you too can make a difference. Kids like Mikaela and Jacob are counting on you.

Congratulations, Class of 2026. Go change the world.

[Nancy Goodman @NancyFGoodman]

@Lenovo -- Please credit me, as you emailed me that you would, for the online purchase of a laptop that you acknowledge you failed to deliver. K870339220 @LenovoCustomer

[Nancy Goodman @NancyFGoodman]

@Lenovosupport: Why haven't you reimbursed me for my online purchase of a laptop that was not delivered?

You sent me an email on March 19 acknowledging the failed delivery and stating that you would credit my account would be credited within 3-5 business days. Yet I am still getting the runaround when I call customer service and 14 business days later, I am still waiting. K870339220

[Nancy Goodman @NancyFGoodman]

The morning of my law school graduation, I announced I wanted a PhD. Michael laughed. Who wanted the real world? 35 years later, Baylor College of Medicine will actually award me an (honorary) doctorate. I am truly honored, but I’d rather have Jacob back. https://t.co/4F0odL8d4r

[Nancy Goodman @NancyFGoodman]

https://t.co/TFwIJtLbA1

[Nancy Goodman @NancyFGoodman]

https://t.co/lpiik1uAUs

[Nancy Goodman @NancyFGoodman]

FINAL VOTE ON THE FY26 FUNDING BILL AND WITH IT, THE MIKAELA NAYLON GIVE KIDS A CHANCE ACT TODAY!

Hi all you pediatric-cancer-policy-nerds! Here is the House Rules Committee vote of yesterday at pm with a schedule for today's vote, at 12:45 - 1:00 pm

Watch on C-SPAN! I'll post too.

https://t.co/cSnPiJY5tg

[Kids V Cancer @KIDSvCANCER]

Now Senator Graham (S-SC) is about to lay out is hostage requirements for him not to block the vote (a la Senator Sanders last month).

[Kids V Cancer @KIDSvCANCER]

The Mikaela Naylon Give Kids a Chance Act is in the HHS appropriations bill. Watch for HHS approp's passage to track our bill

[Kids V Cancer @KIDSvCANCER]

House Republican call for when to schedule the FY26 vote (that would include the MIKAELA NAYLON GIVE KIDS A CHANCE ACT) now pushed back to 4:30 pm ET today.

[Kids V Cancer @KIDSvCANCER]

Looks like the House Republicans are preparing for a Rules Committee meeting. A good sign.

[Kids V Cancer @KIDSvCANCER]

A shutdown is inevitable. We will wait for passage of the MIKAELA NAYLON GIVE KIDS A CHANCE ACT.

I guess we should have all bet a shutdown on Polymarket, right?

[Kids V Cancer @KIDSvCANCER]

Can the Senate overcome Senator Graham's hold? (This is necessary to pass the MIKAELA NAYLON GIVE KIDS A CHANCE ACT).

Majority White Barrasso (R-WY) says he's "trying to get that done today"

[Nancy Goodman @NancyFGoodman]

Here's another challenge to a Senate vote on the FY funding bill: Senator Merkley wants to include a new provision to ban pocket recissions. The challenge of this position is that it's unrelated to DHS and wasn't in Senator Schumer's list of ICE concerns. Are we re-legislating everything?

The MIKAELA NAYLON GIVE KIDS A CHANCE ACT needs all this to be resolved so that the FY26 HHS approps bill passes and with, the MNGKAC.

[Laura Weiss @LauraEWeiss16]

NEW: Dem Sen. MERKLEY is pushing for an amendment vote on the funding package that would ban pocket rescissions, per multiple sources

This has been a big issue for Dems & Trump admin. Senate still trying to get a time agreement for funding package. Dems seeking amendment votes as R’s likely to get some too

w/ @AndrewDesiderio

[Nancy Goodman @NancyFGoodman]

Here's one challenge to Senate passage of the FY26 funding bills which would mean passage of the Mikaela Naylon Give Kids a Chance Act: the phone logs of Senator Lindsay Graham (R-SC) were obtained by DOJ as part of their January 6 investigations.

Senator Lindsay will block the Senate vote. He wants notice. He wants to be able to sue. (A few challenges to his position -- he is the only Senator who is taking this position publicly, his legislative language would not protect Representatives or other Americans).

[Chad Pergram @ChadPergram]

Graham lays out his demands to allow the spending package to go forward later today

Expect a major floor speech by Sen. Lindsey Graham (R-SC) around 11:30 am et about why he’s holding up the revised government funding package.

Graham tells Fox he will lift his hold on the bill if he gets an agreement to have a vote on his bill to criminalize the conduct of local officials who operate sanctuary cities.

Graham and other Republican senators believe they have the home field advantage when they talk about the causes which led to the border crisis and illegal immigration. He and other GOPers believe the two week funding window for DHS gives Republicans the opportunity to reclaim the issue.

Secondly, Graham wants a vote to expand the pool of up to 190 groups/individuals who wete surveiled by former Special Counsel Jack Smith and give them the right to sue Smith.

A provision giving certain Republican lawmakers whose phone records were targeted by Smith the right to sue for $500,000 was stripped from the minibus spending package by the House. So Graham wants to broaden the pool of those who can sue for damages. He also wants to restrict investigations from acquiring future telephonic metadata of House and Senate members unless they are facing a criminal investigation themselves. This would bar future “fishing expeditions.”

Graham is willing to allow the spending package to go forward today if his demands are met.