Genzyme’s Rare Disease Day Relay

On February 29, Genzyme employees in Massachusetts celebrated Rare Disease Day by running an Olympic-style torch relay starting at our Framingham Science Center, stopping at our offices in Waltham and Allston, and crossing the finish line just outside of Genzyme Center.

Nearly 90 Genzyme employees ran the final leg of the Rare Disease Day Relay from Allston to Genzyme Center. Photo Credit: Jack Prior

The torch was ‘lit’ in Framingham just before 9 a.m. to the tune of the Rocky theme song, and the first group of runners set out with cheers and encouragement from their colleagues. Over 28 miles in total, the relay route was split into six legs. Groups of five to seven employees ran the first five legs, and the final leg from Allston to Genzyme Center was run by a crowd of over 80 employees, including CEO David Meeker. During this final leg, a sea of people wearing Genzyme green hats ran along the Charles River through the falling snow. At each of the sites, the runners were welcomed home with finishers’ medals, music, and the support of other employees.

The first group of runners, led by marathon runner Venkat Ryakala, set out from Framingham to run the first leg. Photo credit: David Parnes

Gaucher patient Stacey Feuer and Mary Dunkle from the National Organization for Rare Disorders (NORD) also cheered on the runners at each site and participated in a speakers’ program. Stacey shared her story of living with Gaucher disease and explained her longstanding relationship with Genzyme. “Today has been an amazing day,” she said. “But it doesn’t surprise me at all. This is the Genzyme spirit. When each of you get up and come into work every day, you’re enabling me to get up and do what I do every day.” Mary highlighted the importance of Genzyme’s partnership with NORD, emphasizing that both organizations have been pioneers in the rare disease space.

The second group of runners, led by marathon runner Kai Simon, ran the second of three legs from Framingham to Waltham. Photo credit: David Parnes

In addition to listening to the speakers’ program and cheering the runners, employees at each site also enjoyed playing rare disease trivia games and buying raffle tickets or donating to a bake sale to benefit NORD.

The relay was a tangible demonstration of this year’s Rare Disease Day theme: solidarity. The physical linking of four Genzyme sites, along with the similarity between the employee gatherings at each of the sites, united employees in a single event. Employees used their individual skills and interests – whether running a leg of the relay, cheering on their colleagues, volunteering at a site event, or baking for a bake sale – to work together to support the rare disease community.

The third group of runners, led by marathon runner Kyle Kellinghaus. Photo credit: David Parnes

The Spark that Started It All: Genzyme’s Marathon Team

The runners who completed the two relay legs from Waltham to Allston, with marathon runner Andrew Scholte holding the torch. Photo credit: David Parnes

The Rare Disease Day Relay was a grassroots, employee-initiated effort inspired by Genzyme’s marathon team. For the fifth year in a row, a group of Genzyme employees are running the Boston Marathon for NORD. In the past four years, the team has raised over $125,000 for NORD by putting as much effort into fundraising as into their marathon training. The team has also forged personal connections with many rare disease patients by running on behalf of an individual patient partner.

This year, the marathon team wanted to find a way to invite as many employees as possible to be involved with their efforts for the rare disease community, so they decided to organize a massive event on Rare Disease Day to connect employees, patients, and NORD. In a small group brainstorming meeting, multiple event ideas were discussed until Simone Martell from Patient Advocacy suggested the idea of running a relay between several Genzyme sites. The idea immediately resonated with everyone in the meeting. As planning for the relay commenced and more employees became aware of the event, enthusiasm for the idea spread like wildfire.

Genzyme CEO David Meeker ran the final leg of the Rare Disease Day Relay from Allston to Genzyme Center. Photo credit: Jack Prior

The Rare Disease Day Relay is just one of many ways the marathon team is expanding their program. Starting this spring, they plan to be involved in other races in addition to the Boston Marathon. A team will run the 200-mile Reach the Beach relay, which starts at the Wachusett Mountain Ski area 60 miles west of downtown Boston and finishes at the Horseneck Beach State Reservation on the southernmost coast of Massachusetts. Others will run the Providence Marathon and Providence Half-Marathon. The team intends to engage more Genzyme employees and participate year-round in races of various distances and in various locations. Each quarter, they are planning choose a different cause to run for, such as an MS patient organization or a community initiative.

Phil Maderia, leader of Genzyme’s marathon team, led the final leg of the Rare Disease Day Relay from Allston to Genzyme Center. Photo credit: Jack Prior

It’s All About Connections

Enjoying the run! Photo credit: Jack Prior

Phil Maderia, director of Program Management based in Allston, founded Genzyme’s marathon team in 2008 and has been its fearless leader ever since. While he has worked to expand and improve the initiative every year, the core has remained the same. “It’s all about connections between people,” he says.

The patient partnership concept originated when Phil made a personal connection with a Pompe patient named Rebecca Brooks. He had already run the Boston Marathon twice for NORD and was preparing to run it again when he attended a small dinner in her honor. Inspired by Rebecca’s story and the connection he felt with her, he came up with the idea of running a race on behalf of an individual patient in addition to fundraising for NORD.

Running the final leg of the Rare Disease Day Relay. Photo credit: Jack Prior

He believed that both runners and patients would benefit from this type of relationship and that it would be a way to personalize their reason for running. From that year on, Rebecca became Phil’s patient partner and other runners began developing patient partnerships as well.

Following the marathon, Rebecca wrote, “this is what we need more of in life. inclusion. compassion. sensitivity to the people that comprise our world…the fortunate and the unfortunate. the willingness to take each other in. to believe in each other. to lift each other up.”

Phil Maderia and patient partner, Rebecca, hold the Rose art work Rebecca made for the auction. 

One connection tends to lead to another. During the 2011 Boston Marathon fundraising season, Phil and the other runners set up an online silent auction to raise money for NORD. Phil’s patient partner Rebecca, who is a talented artist and writer, created a rose stained glass window to be sold in the auction. In her poetic description of the artwork, she emphasized her impression that the rose – like the marathon – is a vehicle for connecting people to each other:

some will see a rose,
others will see their triumph,
their perfect offering to the lives of others,
the way i see each of you
and the inextricable way we are all bound to each other
in perfect concentric circles of energy and light.

But Rebecca never could have anticipated the number of connections that would result from her rose. Erin Hunter, a Quality Assurance manager who deals with product labeling and packaging at Genzyme’s Northborough site, browsed the marathon team’s silent auction website and saw Rebecca’s rose.

Erin Hunter’s granddaughter, Lily

Erin’s granddaughter Lily had been diagnosed with Pompe disease when she was two weeks old. When Erin saw Rebecca’s beautiful artwork, she thought it would be something that could inspire her granddaughter because it was made by another very special Pompe patient. “With everything Lily’s gone through, I thought Rebecca’s rose might encourage her as she grows that she can overcome challenges and be creative and do what she wants in life,” Erin said. “I think it will be a symbol of inspiration for her.”

The final leg of the Rare Disease Day Relay along the Charles River. Photo credit: Jack Prior

Erin bid on Rebecca’s artwork and won it for Lily. When she and Phil connected in the process of transferring the rose to Erin, they realized that they had met before. Erin had started working at Allston in 2008, and Phil had made a presentation at her new hire orientation. But Erin’s first day at Genzyme had been their only real connection up until then.

Erin shared Lily’s story with Phil and Rebecca, and both were extremely touched by it. Phil was then training for the world’s most elite triathlon, the Ironman held in Kona, Hawaii, each year. He decided that he would run this race on her behalf and raise money for the United Pompe Foundation (UPF). Phil, with the help of many coworkers in Framingham and Allston, raised over $3,000 for UPF and completed the 140.6 mile journey in Lily’s honor.

Approaching the finish line of the Rare Disease Day Relay! Photo credit: David Parnes