Our third trip to Washington D.C. this year proved to be the best yet. We appreciate all who were able to attend and see how far we have come. I think we have perfected the process now!

Thank you to the Event Planning Committee for all your hard work putting this conference together:  Gwen Riechmann, JoJo Calora, Lori Kay, Jan Garrett, Paul Koneczny, Julie Haas, Coleen Fryer, Stephanie Tolbert, and Kqasha Ananta.

Another big thank you to the Government Affairs Committee for arranging our meetings on the Hill, writing letters throughout last year, social media posts, and all around professional representation of USA Thalidomide Survivors: JoJo Calora, Lori Kay, Jan Garrett, Jean Grover O’Connor, Aaron Arndt, Burt Pusch, Leslie Mink, and Katherine Falcone.

Highlights from the 2025 USA Thalidomide Conference

Day 1

Began with our conference registration, annual membership meeting with virtual access by those unable to attend in person, and overviews of the weekly schedule by Gwen and Laura. A fun game was introduced by Julie Haas, “Get-to-Know-You BINGO!” Everyone worked the room finding out more about each other.

Our speakers were outstanding this year!

• Professor Neil Vargesson, FRSE, FRSB, FHEA, PH.D. presented a session on “Thalidomide: How did it do what it did?” It was very educational and informative providing details of how our bodies reacted to the drug. He also conducted private question and answer periods for those who were interested.
• Priya Penner’s session on Disaster Planning for the Disabled presented disaster strategies focusing on the intersections of disability justice, disaster and emergency operations and disproportionate impact on multiply-marginalized disabled disaster survivors. She came to us from The Partnership for Inclusive Disaster Strategies.
• Dr. Drea Osborne, Physical Therapist, led us in stretch and mobility exercises. She was not only interesting and informative, but she made this session enjoyable and fun. She came complete with a sense of humor and her positivity rubbed off on all of us!

Days 2 and 3

The rubber begins meeting the road…with meetings (see how I did that?) on Capitol Hill.

We met with numerous staffers, most of whom expressed interest once the bill was introduced. Perhaps the most interesting and informative meeting, however, was our meeting with Congressman Van Drew. He was kind enough to make time in his busy schedule to meet with all of us (about 25); not in the hallway, not in the waiting room – he invited us all into his office.

Van Drew explained how a bill must be sponsored and introduced by a member of congress. Before being introduced to the House and/or Senate, it must go through committees for mark-up (Energy and Commerce, Appropriations, etc.). He assured us our bill would be assigned a number soon making it an official document.

Congressman Van Drew also said it would be a “big lift.” It could go back and forth between committees. The bill could also be submitted with other bills. There are best- and worst-case scenarios, but the bottom line is…we are so much further than we’ve ever been.

Congressman Van Drew kept his word!

WE HAVE A BILL!

We have an actual bill, with a number – H.R. 5865, that includes the word “compensation”. No, we didn’t get what we wanted, but the choices were: 1) Wait for a new administration, 2) find a new sponsor, 3) start all over when all of us are aging, and 4) receive nothing at all. We chose to receive what we can now, not lose momentum and continue the fight. Adding a review clause (suggested by Katherine Falcone) for additional income annually was a big part of this decision. Our thanks go out to her for helping us navigate a complicated legislation process. We can be proud of our persistence, hard work, and dedication to this important quest for justice. We deserve it and don’t want to risk losing everything.

NOW THAT WE HAVE A BILL NUMBER…

We Need Your Help!

This is the moment when every voice matters.
We need to “socialize” our cause—be seen, be heard, and bring H.R. 5865 directly to our representatives.

TAKE ACTION!

• Contact your Representative and Senators and ask them to support H.R. 5865.
• Encourage family and friends to reach out to Congress on your behalf.
• Write, call, and visit your legislators’ district offices.
• Share our story on social media and in your community.

The more legislators who know us, the more support we will gain.
The squeaky wheel gets the grease. And right now—we need everyone squeaking!!! It’s everyone’s responsibility to get the word out.