The Children's Medical Research Foundation, Inc.

11/16/2025

05/15/2024

Yes, you did my beloved Kirby. You lived. You loved. You chose to be happy. You showed us the way. Your life mattered. And no, we will never forget.

Today, please think of Kirby, her life and smile.

And remember all the other children afflicted who have the potential to be anything.

06/28/2022

Received this note from Kari Lato today and want to help her spread the word.

Greetings from Rare & Ready! We will be hosting a webinar about telehealth across state lines and are collecting stories. Have you ever had a telehealth visit with an out-of-state provider? If yes, please contact me about your experience. We want to learn from the community!

Look forward to hearing from you, thank you!

Kari Lato
Sr. Director, Policy & Advocacy
Rx4good
www.rx4good.com
[email protected]
Phone: (608) 577-5105

Empowering organizations to deliver on their promise to put patients first.

03/31/2022

Look at the note below from Rare & Ready, a new genetic disorder coalition gaining momentum. The Foundation has joined this group of patient advocates who are gathering support to change the way our state Medicaid programs are creating yet another barrier in the day in the life for the rare disease community. Please consider learning more about Rare and Ready, signing on to show your support for giving access to FDA approved treatments to all patients.

Interested in advocacy? We need you to join the Rare & Ready: A Genetic Disorders Coalition!

Patients with rare and genetic disorders deserve timely access to FDA-approved treatments. Many state Medicaid programs are developing detrimental strategies to limit access to FDA-approved rare disease therapies. Some states are even making judgement calls and limiting access with coverage criteria that are more restrictive than the FDA label.

This must stop, and we need your story to be shared to show the impact of these policies.

Do we still have your attention? Good!

Rare & Ready represents all rare and genetic conditions. There is no time commitment to join, but we need your support if we are going to change state Medicaid policies. You can follow the conversation on Twitter and email us at [email protected] for more information.

11/30/2021

Donate We are asking that you consider adding The Children’s Medical Research Foundation, Inc. to your charitable contributions. We are a public, 501 (c)(3) charitable corporation, so your gift is tax deductible under the IRS code. All fund-raising is done by the Foundation’s founders and volunt...

01/04/2021

Every parent’s worst nightmare is losing their child. And what if money is the one thing that stands in the way of your child’s chance to live? This is our reality. With your help, we can save Connor.

01/04/2021

A wonderful man continues to do great things. Thank you Tim Miller.