To Representative Ferguson
From: Christine G. Duane, Executive Director, The Foundation for Casey’s Cure, Inc.
RE: The Rare Disease Community of Georgia
Date: March 2, 2021
Dear Representative Ferguson,
On Tuesday, March 1, I had the opportunity to speak with your staff member, Robert Redding.
The purpose of our conversation was to provide him with information about why you, Rep.
Ferguson should support federal legislation that will improve access to care, services, and research that will improve the lives of the rare disease community of Georgia, especially within
your district. This is the text of my presented speech to him. On behalf of the Rare Disease Community across Georgia and the rest of the United States, 25 million patients are calling for your support. I hope you heed their call on their behalf.
Sincerely,
Christine Duane, Executive Director of The Foundation for Caseys Cure, Inc.
162 Wellington Drive
LaGrange GA 30241
732-300-5708
The text of our call was as follows:
Hello!
My name is Chris Duane from LaGrange/Troup County, Georgia.
In preparation for this meeting, I’ve spent some time reviewing the health-related bills and resolutions previously or currently supported by Representative Ferguson. In doing so, I’d like to commend Representative Ferguson for his support for:
• HR 119: Lower Cost More Cure Act of 2021
• HR 4066: Save The Rural Hospitals Act of 2021
• HR 3630: The Lymphedema Treatment Act and
• HR 1916: Ensuring Lasting Smiles Act
Representative Ferguson’s support for these and other health issues leads me to my first ‘ask’ for today’s meeting.
As an active member of the Rare Disease community, I hosted an event at Lafayette Square on Monday, February 28, in support of #RareDiseaseDay. I was honored to hear the tragic stories of my neighbors in LaGrange and those who live in your district and their struggles with getting help for their very sick child or themselves. It is on behalf of these people that I urge Representative Ferguson to demonstrate his commitment to the Rare Disease community and join with 100 fellow House members of the nonpartisan bicameral Rare Disease Congressional Caucus. The Rare Disease community’s voice needs to be heard and we are looking for his voice to join with ours.
One of the other resolutions he supported was HR 3537, Accelerating Access to Critical
Therapies for ALS Act, which was introduced to the House floor on May 25, 2021, and moved for Presidential signature on December 23, 2021, to become PL 117-79. This bill was passed with unprecedented speed; a credit to the writers and supporters of the ALS community. This leads me to my second ask: The Rare Disease community strongly urges Representative Ferguson to support the Speeding Therapy Access Today Act of 2021, more commonly known as theSTAT Act (HR 1730). This bill is a bipartisan bill, created with the input of the Rare Disease community, aimed at improving the development of and access to therapies for the Rare Disease community.
Specifically, the STAT Act of 2021 (HR 1730) will enact policy reforms at the FDA level to accelerate the development of therapies across the rare disease spectrum. And, just as the Critical Therapies Act did for ALS, the STAT Act of 2021 has the huge potential of shortening the development process of a rare disease patient from an average of 15 years to as few as 3-4 years.
25 million Americans deserve access to therapies within their lifetime. Many of these
Americans will die before those therapies are made available to them or their family members.
Five years ago, the FDA established the first FDA Center of Excellence focused on
oncology, which has been extremely successful in bringing new cancer therapies to
patients. We ask for the same opportunity to be given to the Rare Disease community.
We ask you to show your support for the Rare Disease community in your district and
cosponsor the STAT Act of 2021, HR 1730.
Thank you and respectfully ask for your support on these legislative issues.
_______________________________
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