Back row: Paul and LorXena Koneczny, Laura Kendall. Front row: Gwen Riechmann and the star of our show, Aragon, on his first big service dog trip. He not only looked mahvelous – he did great! We were missing an important member of our team, Lori Kay. She couldn’t be with us due to a family emergency and we felt her absence for sure.
“Our goals can only be reached through a vehicle of a plan, in which we must fervently believe, and upon which we must vigorously act. There is no other route to success.”
~ Pablo Picasso
Planning a conference is not for the faint of heart. It takes commitment, patience, diligence, and teamwork. Our committee had all of that, as well as disappointments and plenty of times of “going back to the drawing board”, but we powered through it all!
But enough about us…
Registration went off without a hitch. Here’s what we learned. The goody bags were just ok. We had hoped the pins could be customized and new ones could be added to the lanyards every year, but learned they fell apart. Hey, the good news is we came in under budget this year! We also learned the programs should have been handed out at registration, and the team building exercises should have been after dinner. We had fewer show up for the two “get to know you” games the committee prepared, but we hear they did help us get more comfortable with each other. Many of us have never met in person and the ice breaker questions were kinda fun!
The conference portion of the event went smoothly, except for a few hiccups to be described a bit later. Dr. Rudolf Beyer, Medical Head of the Thalidomide Clinic in Hamburg, gave an informative remote presentation about how thalidomide is affecting survivors as we age. Jan Garret spoke on the ADA regarding what it covers and how it protects us. I must mention how powerful Jean’s film, “Thalidomide in the USA: Seeking a Life of Dignity & Independence” was to everyone in the room. This provided a wonderful opportunity for everyone to become vulnerable, share our life stories and put our feelings out there. Here is a link to the film:
Two of the issues we had were keeping the program and legislative meeting schedule updated. The program was created before arriving in DC. We only had three days to fit in meetings with representatives, the arranged tour of the Capitol Building and a full day of our conference. Paul Koneczny was kind enough to score us tickets to attend House and Senate galleries so a few of us took advantage of those. We had two senator staff meetings and two HELP committee meetings when the programs were printed. Here is what happened after we arrived:
MS Senator Roger Wicker (R) – met with Katie Roberts
PA Senator Bob Casey (D) – met with Michael Gamel-McCormick
OR Senator Jeff Merkley (D) – met with Julia Brunner
MA Senator Elizabeth Warren (D) – met with Matias Cano
MO Senator Josh Hawley (R)
IL – Senator Tammy Duckworth (D) – met with Stephanie DeLucas, PhD
MS – Congressman Mike Ezell (R)
MA – Edward Markey (D) – met with Sanjana Rana
Senate HELP Committee Disability Policy Director Sarah Mueller
Coffee with Senator Tammy Duckworth and Senator Durban (video link below)
As a result of these additional meetings, our timing was a bit chaotic at times and communication was difficult. We are grateful it happened because we received far more exposure than we expected! Next time we’ll be better prepared for change. Awareness is half the battle, right?!
Another political contact was made as well. One of our members, Randall Higgins, met Congressman Greg Casar, the member for Texas’s 35th congressional district, on his flight to DC. He shared our story and gave him a copy of Jennifer’s book!
And speaking of Jennifer Vanderbes…the US thalidomide friends and family wanted to show our appreciation to this remarkable woman for leading us on our journey. We surprised her with a crystal award in between legislative meetings in the Hart Senate Building. The inscription reads:
For your unwavering support and tireless research,
your groundbreaking work is leading us on a quest for justice.
Jennifer, you are being honored with much
admiration and gratitude.
Thank you for your amazing book,
Your US thalidomide friends and family.
Have you ever looked up thalidomide
and seen this picture?
We met the person behind these feet. It’s our very own family member, John Marshall, born with 12 fingers and 14 toes. BTW – nicest guy you’ll ever meet.