Piece by Piece Travels to D.C. The Journal of Our Journeys
Day 1 | Friday
All hands were on deck as we began our journey from sunny Tampa, Florida to what we would find out was a very windy and cold Washington D.C. We began our journey after a hearty breakfast at Cracker Barrel. Yum! With snacks, maps, and 150 mannequins on board we journeyed up the East Coast via I-95. Our caravan included a white rental van, Steve’s new handicapped conversion van (purchased from another ALS patient), and the infamous Piece by Piece trailer. We skipped lunch to save time, grabbed dinner in South Carolina, and then stopped for sleep in Fayetteville, North Carolina after a long day of driving.
Crew Members (from left to right) Sandy Montgomery, Volunteer restaurant selector aka Mammaw Dara Alexander, Designated van driver and outgoing Florida Chapter President Dani & Melissa Franks, Steve’s doubly-dangerous ALS defeating twins Steve Franks, ALS patient and commander & chief Susie Franks, Steve’s wife and co-pilot extraordinaire Kayla Allman, Volunteer and texting expert Mallory Everitt, Volunteer and resident laptop techy Kamden Kuhn (behind the camera), ALS Awareness Guru
Day 2 | Saturday
After a good night’s rest, we began our journey again bright and early. A slight detour held us up north of Richmond, Virginia where I-95 had been closed due to an accident. Have no fear! Steve had a plan!
We arrived in Washington around 5pm and met up with more extraordinary Florida volunteers who had flown in just for the Piece by Piece Display - Linda Snyder and her sister, Diane Altman, along with Pat Franks (Steve’s mom).
Day 3 | Sunday
7:30 am – Our gang gathered at the U.S. Navy memorial to begin our meticulous mannequin set up routine which includes heavy lifting and lots of measuring. Thanks to the help of even more volunteers who met us Sunday morning, we completed the process in just over an hour. Thanks Kasey Sheffer (of Dunn&Co) & family and Cathy Collet (from Indianapolis)! We also provided details about the exhibit to those attending the National ALS Advocacy and Public Policy Conference and encouraged conference attendees to visit the display.
9:30am – Yikes! It was sooo windy there. Some of the mannequins began blowing over. A little wind never stopped our team anyway. Despite breaking a few of our mannequin forms, we continued to pick them up and wish the wind away!
2:00pm – President of The ALS Association (national), Jane Gilbert, visited the Piece by Piece Display along with some national trustees, and they loved it! NBC Washington also arrived to interview Steve Franks and his mom for a mother’s day feature on fighting Lou Gehrig’s Disease.
5:00pm – Let the tear down begin. It had been a fabulous day for ALS awareness. A steady stream of curious onlookers wandered through the display all day. We gave out information, educated the public about this awful disease, and Cathy Collet served on “button patrol,” giving every visitor a large button reading “Stop Body Theft.” Even more faithful volunteers who had flown in from Florida joined us for tear down that evening. Thanks to Rick Ferguson, Cindi Whitmer and family, we were packed up before we knew it. Exhausted, we retired to our hotels to recuperate for more hard work ahead.
Day 4 | Monday
Dara and Kamden spent much of the day obtaining parking permits for our exhibit at the capitol reflecting pool. Steve and Susie mingled with other ALS patients at the J.W. Marriott and attended meetings for The ALS Association’s Public Policy Conference. Other volunteers spent the day site-seeing. We continually checked Tuesday’s forecast which called for rain, rain, rain! We made the decision to set up the exhibit earlier than expected on Tuesday to give visitors plenty of time to observe it before the rain came.
Day 5 | Tuesday
7:30am – Once again, the best volunteers in the world arrived for mannequin set up. Bundled up in our anti-florida weather clothes, we placed 150 mannequins in front of the Capitol building and hoped for the temperature to rise above 50 degrees!
9:00am – Enter CNN! Steve Franks and Maryland pALS, AL Herman were interviewed by a CNN camera crew and producer! CNN then followed AL Herman into the meetings with his congressional leaders to advocate for funding of the ALS Registry at the CDC and the ALS research program at the Department of Defense.
12:00pm – And the rain began. Yuck! We knew it was coming. We quickly gathered all of our brochures, postcards, and buttons and ran for cover. Steve made the decision to leave the display out in the rain. After all, we only had one shot at Washington D.C. Onlookers still observed the gripping exhibit with umbrellas in hand. Cathy Collet and Susie Franks braved the rain and cold to talk to onlookers about the need for ALS awareness. Meanwhile, other Florida advocates met with congressional leaders in the capitol buildings to encourage lawmakers to request appropriations in support of ALS research.
3:00pm – Despite the rain, Senator Murkowski of Alaska arrived with Congressional News cameras. She observed the mannequin honoring pALS Pat Dwyer whom she knows personally. She met the Franks family and mingled with other Florida chapter leaders and volunteers, expressing her support in the fight against ALS.
6:30pm – Tear down time. We removed photos of loved ones from the wet shirts and carefully packed them in plastic containers to be laundered when we got home. Volunteers packed all of the items back into the trailer for the journey home. The sun was setting and our crew looked back on the day with satisfaction. We had taken another great stride in the fight against ALS. More people knew about the urgent need for a cure. Mission accomplished!
Day 6 | Wednesday
Round 1 of our gang journeyed back to sunny Florida, while the Franks family stayed in DC for a few extra days to sightsee. Our trip was not nearly as fun as it was when we followed the Franks family. We arrived home sweet home on Wednesday night knowing we made memories that will last a lifetime and hopefully a difference that will last even longer!
Media Alert!
Bay News 9 Tampa | May 9 “Pinellas man exhibits Lou Gehrig's disease art in D.C.”
ABC Action News Tampa | May 7 “Man uses mannequins to fight for ALS cure”
