This year, that inspiration will carry the team as they work to recover from the events that have changed their lives forever. In the days following April 15, while we were flooded with coverage of the event and glued to news sources as the story continued to unfold, members of Genzyme’s running community were circulating personal reflections with one another. As a way to say ‘thank you’ for the outpouring of support the team has received from colleagues around the world, they have chosen to share their thoughts with us.
One way that many employees based in Cambridge helped was through donating blood at a drive held on April 3, a few days prior to the Boston Marathon. Kim, Blood Donor Services at Massachusetts General Hospital, shared with Genzyme through an email that the blood collected from our drive was used in the emergency room when ambulances arrived at the hospital.
In addition, to date, employees have donated over $12,000 to The One Fund Boston, Inc., Boston Medical Center (Boston Marathon Victim/Families fund) and the American Red Cross of Eastern Massachusetts, to aid those affected by the Boston Marathon bombings with their medical expenses and other needs. Genzyme will support employees’ efforts through a G.I.V.E. grant.
While we all continue to try to understand the horrific events that took place in our own backyard, Genzyme’s running team is focusing on the positive aspects of the bond that they now share and the work they have done for patients which is undiminished despite the terrible end to the race.
Amy Atwood, Allston Communications Manager, Genzyme’s Running Team Board Member, who was on her way to the finish line when the bombs exploded, helps to set the scene.
Saturday night, April 13, was a magical night for everyone involved with the Genzyme Boston Marathon Team. That evening, members of the rare disease community who were partnered with the runners, as well as their families and Genzyme representatives, all gathered together at the Allston Landing Facility to get to know each other and celebrate their partnership, the team’s commitment to raising awareness and funds for rare diseases, and the upcoming marathon.
You would never know that many of the nearly 100 people had only just met for the first time; it was more like a reunion of old friends. The smiles were infectious and the excitement of the shared bond in relation to the Marathon Team – which included two runners from Sanofi and two rare disease patients, in addition to 15 Genzyme employees – was evident throughout the evening.
It continued at the breakfast on Monday morning when many met again, this time to wish the runners well before they were shuttled to the starting line. As soon as they left, patient partners, representatives from the National Organization for Rare Disorders (NORD) and Genzyme colleagues headed to Mile 14 in Wellesley, Mass., to wait for the runners to pass.
It was only a few hours later that the first runners, Sharon Cotnam of Allston, and David Cunningham of Waterford, Ireland, flew past Mile 14, quickly followed by James Drob, a Sanofi colleague from Swiftwater, Pennsylvania. And over the next hour and a half, Mile 14 was filled with cheers, hugs and words of encouragement (as well as much warrior paint!) as each of the Genzyme Marathon Team passed by – some even stopping to visit with their patient partners and friends before resuming their run.
As soon as the last Genzyme Marathon Team member passed Mile 14, the cheering section broke up. Some headed home, while others went to try to catch a glimpse of the runners at another point along the route. And nearly 20 headed into the city, with passes to sit in the grandstand right in front of the finish line, to see the runners cross and then meet up with them after.
But because of what happened at 2:50 p.m., not everyone got to finish the race; many were halted just miles from the finish line. Everyone’s experience of those moments – and subsequent days – was different. The horror of the tragic end to the Boston Marathon initially overshadowed much the good that surrounded it, but not for long.
As the team began to process what had happened, the bombings served to bring out the good even more because of the sharp contrast. Runners, patient partners, Genzyme employees, and NORD representatives shared their experiences with one another in person and over email, and the prevailing feeling was that the “marathon spirit” of this community was not broken. To slightly modify the motto of the team and NORD, “alone we are rare; together we are Boston strong.”
Below are excerpts from the many communications that circulated among team members in the days following. Links to the communications in their entirety are available below.
Phil Maderia, Director, Engineering, Genzyme Boston Marathon Team Member and Genzyme Running Team Board Member – from the Running for Rare Diseases blog:
This community will forever be tied to the events of April 15, 2013. Let us all use this tie to stay connected with each other and remember the wonderful relationships formed over the last few months. Use the triggers that we can’t control to inspire each of us to do what we can control; reach out to our team members and partners and say ‘hey, I was thinking about you today.’ Let’s use this tragedy as a positive means to build our community.
Rare Disease Community Member and Patient Partner Gail in an e-mail to her friend:
“I was out in Wellesley for most of the day, deciding to go to the finish line to see the team members finish only at the spur of the moment, after they had all passed us at mile 14.5… It turned out to be the most frightening event of my life. Close call, but as I told (my new best friend, who I had just met that day) Amy, our numbers were not up – it was not our time to go. I’m still having a bit of a hard time, grateful that I’m ok, but very shaken. The good news is that I’m okay – but a difference of as little as a minute or two might very well have resulted in a different story. What a nightmare – it was without a doubt the most terrifying event I have ever experienced.
“We had parked under the Prudential Center – the two photographers (David and Doug) and Derek Gavin (from NORD) had gotten out at the door to the garage – we said we would meet them at the finish line. I accompanied Amy to find a parking space, which we did fairly quickly. We took the elevator up into the building and were walking through the mall out towards the street when I asked if she would mind if we went back to use the ladies room. That probably saved our lives.
“As we were walking towards the exit, we heard a loud noise and what sounded like falling scaffolding or something – I now know it was the first bomb and windows being blown out. I turned to Amy and said “What was that?” and then there was a huge “BOOM” – this time right outside. Then – instant panic – people running and screaming, knocking over tables and chairs. Rationally, I knew I had heard a bomb, but I was afraid there might also be a shooter – I remember running and trying to figure out whether or not there was a place we could hide (there was not). What’s kind of amazing is that I recall some things with razor-sharp precision – like evaluating where we might hide and detachedly wondering if I was going to die momentarily – and others, not at all – like actually walking out of the building. In any case, I grabbed Amy’s bag so we wouldn’t get separated and the two of us made it outside to the street, which was full of smoke and people were wandering about anxious and shell-shocked.
“Some were on their phones, others were taking pictures… ambulances and cruisers raced by and the sirens were deafening. I texted my mom to let her know I was okay, and then a runner came up to me, dazed and face covered in salt from her run, asking to use my phone to let her husband know she was okay. Luckily, my battery lasted long enough to text her husband (we couldn’t get a line out, finding out later that the networks were completely overwhelmed, and then they had shut down cell capability to prevent remote bomb detonation), and then it died. Thank god I also had my blackberry, which can’t text, but at least could email. One of the number of small decisions that had a huge impact that day – I had almost left it in my car, thinking I would never need two phones. What still is beyond me is that though I was shaking with fear, I remained completely calm throughout the whole day – maybe it was shock, but it certainly served me better than freaking out would have. Amy was in what she called “crisis mode,” trying to track everyone down, and I’m convinced that her focus reacted with my calmness and helped us both keep it together.
“We didn’t know what to do – I just knew I couldn’t lose Amy – and were actually walking towards the clock at the finish line, but police were everywhere and started pushing us back. I’m so glad they did, because I would never have been able to erase the images of what lay there on the sidewalks. It was mayhem. Thousands of us were herded backwards to the Mass Ave bridge over the Mass Turnpike, which scared the crap out of me since we were essentially sitting ducks on bridge over a highway – now there’s a target if there ever was one. My terror at being in a crowd of people was almost overwhelming. We were hearing rumors to avoid trashcans and mailboxes – but what could we do???? Some runners had been diverted away from the finish line down Hereford Street at about mile 26, while the rest were stopped a couple of blocks away under the Mass Ave underpass.
“We tried to find people we knew among the runners at the underpass, but slowly made our way to Charlesgate where we stood for what seemed like forever. Amy was methodically and obsessively trying to locate our runners and families on her two phones; I was emailing back and forth with friends, having them get in touch with others for me – and finally, finally… everyone was accounted for. We walked. And walked…
“We ended up walking to her apartment in Brookline, where her cousin (a runner who had gotten stopped at mile 25) was waiting with her family. I was able to call the friend who had let me park at his house – he came to get me and bring me to my car… I had left my house in the morning – a world away – at 6:20 a.m. I think I got home around 9 p.m. It felt like a lifetime. They were targeting the families of the charity runners – that would be people like us – it’s just so hard to comprehend. I am so grateful that I am okay, but shell-shocked is an apt description – and thankful that everyone in our group was safe. What a sad, sad, day. Gail
Post Script: I later received several texts from the husband of the runner whom I had helped, thanking me for getting in touch with him. They live in LA; she was here by herself – he would have had no way to find out what happened to her for hours. She’s running again next year – and he’s coming with. We have plans to get together to pay tribute to the random acts of kindness that can bind strangers together. Gail”
Genzyme Marathon Team runner John Koltvedt of Sanofi Biosurgery – an e-mail to the Genzyme Marathon Team:
“Genzyme Running Family, I write this to you with many mixed emotions following the events just a few days ago. In the short time and brief meetings I‟ve had with most of you, I have always felt a sense of belonging and family. You all opened up to me and made me feel like part of your group which has long been standing. It was that feeling that I was hoping to have when I made the decision to commit the time, training, and efforts to making a difference in rare disease and to impact patients‟ lives. What I found was that I gained more than I had hoped for.
“In a day that was supposed to be filled with excitement, accomplishment, and joy, a terrible tragedy hit at the finish line. One thing I really missed on Monday was not being able to see you and have some sort of closure with the day and months leading up to it. Trust me, I was thinking of you all this evening while you were together. Because I couldn‟t be with you this evening, I hope you can allow me but just a few moments to share a glimpse at the finish.
“I had just finished the Boston Marathon, raised close to $3000.00 for NORD, and had the amazing experience of partnering with a wonderful little boy named Donnie. Over the weekend, I had the joy of seeing Donnie laugh over and over. Donnie and I developed a relationship and bond that I never thought possible. His smile greeted me at mile 14 along with several other Genzyme/Sanofi employees, friends and family. This gave me a tremendous boost.
“All of this quickly became insignificant in the immediate moments following the explosion. I had told my wife not to wait for me at the finish because I wanted to be able to see her right away in the reunion area. After the explosion, I knew in my gut she was at the finish. She had wanted to snap photos of all of us as we finished. I Thank God that Amy gave my wife and the Hunt family VIP passes that allowed them access to the grandstand on the other side of the street. If my wife and the Hunt family hadn‟t received these passes, would they have gone on the other side?
“In the following 30-45 minutes I searched frantically for Rebecca and then she finally found me. In the moments leading up to that reunion, I can honestly say, I have never been more scared in my life. Over the next 20-30 minutes we confirmed Donnie his Mother and Grandmother were also safe. They had left the grandstand minutes before the explosion. In all of this, my accomplishments were blurred, tainted and meaningless, I felt no joy only anger toward whoever would do such a thing.
“Sore, cold and shaken, we walked from Copley Square back across the river to Cambridge arriving at our hotel around 8:00 p.m. We finally were able to confirm all of your safety and communicate ours to most of our family and friends. Once we had a chance to collect ourselves and began to watch some of the news coverage, it was then we realized the magnitude of what had just happened and the countless and senseless effects on hundreds of people and their families.
“No matter how hard you try, there is no way to make any sense of it. Like all of you, I have made the choice to remember the good, the differences we made in rare disease awareness and the patient connections we developed that WILL last a lifetime. This bond and accomplishment is even more meaningful today. I have chosen to focus on the positive experiences; my new friend Donnie, the hundreds of “fives” I gave along the 26.2 mile route, the constant smiles, flags, signs and cheering for 26 miles and lastly all of you, my new running family.
“In the aftermath, my memories will focus on the concerned and caring people from around the world that came together in a 4 block area helping one another. I will remember the courage and strength exhibited by so many as well as the others who are unnamed and unknown who offered food, water, clothing or any other help to those in need. April 15th 2013 will be a day none of us will ever forget and we shouldn‟t. For me the day has only driven me to do it all again.
“Lastly, I know some of you did not get to finish the race. I cannot imagine the emotions this has caused, just remember your accomplishments were not just the finish line, it was the impact you were able to have prior to the race and in the months to come for patients with rare diseases. I look up to all of you and honor your efforts. As the team motto states, “Alone we are rare, together we are strong”.
Rebecca and I send our thoughts and prayers to all those that had their lives changed forever Monday. Our hearts go out to Boston…”
Rare Disease Community Member and Mother of a Patient Partner, Julie – an e-mail to Genzyme:
“I am thinking of all of you today, all of Boston, the patients, Genzyme runners and families, and the NORD and Genzyme folks who were instrumental in organizing the event. I had an opportunity to share a comment about Running for Rare Diseases and the Boston Marathon on WNYC Radio this morning. The comment begins at minute 26:21 of the Boston Marathon Bombing Updates of the link below. http://www.wnyc.org/shows/bl/2013/apr/16/boston-marathon-bombing-updates/. Participating in Running for Rare Diseases was a beautiful experience that even the most tragic events cannot shatter. - Best, Julie”
Genzyme Boston Marathon Team Member and Genzyme Running Team Board Member Kailene Simon, Principal Research Associate, Gene Therapy – an e-mail to the Marathon Team:
“To the 2013 Genzyme Boston Marathon team, As we sit at our desks on this sunny Monday morning, I‟m sure we are all very aware that it was just one week ago right now that we were venturing to the starting line of the 117th Boston Marathon. We walked to that starting line a strong, united team, ready to travel 26.2 miles for our patients, for their families, and for each other. It was an absolutely beautiful day and a beautiful race. I remember the anticipation of getting to mile 14, and seeing Gail’s smiling, bright face as she ran toward me with her beautiful sign. After having sat on the sidelines at that very spot last year, THIS was my year to feel the love and excitement that the RFRD community bestowed on each runner. And oh, did I ever! It was magical. And it gave me a huge push forward and I continued on to pass Bennett and my family at mile 17, friends of Ashley‟s at mile 19, a very excited Lisa Prior at mile 20, and a smiley Shay at mile 22. Then I heard two loud bangs, and received a phone call from my brother at mile 23. And you all know the rest of the story.
“But let me take a step back. It may take me a lifetime to tell you how much this year‟s team has meant to me. On Saturday night as I looked out over the room I felt such love and togetherness wash over me. I was so humbled by what this team had accomplished and SO proud to be a part of it. From the beginning, as we compiled the roster, we knew we had a special and unique group of runners – not just geographically, but in spirit, as well. When I put together my notes for what I wanted to say on Saturday, I struggled with how to keep my remarks under 10 minutes. I could have gone on for hours about each of you. Every single person on the team has left a mark this year, and every one of you has contributed something incredible.
“I know for many of you this is the first time you‟ve been a member of this team, so you have no frame of reference, but let me just say, the fact that so many of you had patient families get on a plane and fly all the way to Boston to be by your side is nothing short of remarkable. I cannot overstate that. This year we have all worked hard to create a family that the rare disease community is taking note of, and wants to be a part of. And quite frankly, we made it look easy… The connections you all made with your partners and your fellow teammates seemed so genuine and so effortless, and I know that is a direct reflection of the type of people you all are. Kind, good-hearted, sincere people who came out to run a marathon and maybe meet some good people along the way, and ended up making more of an impact than they could ever know. We have taken a tremendous step toward accomplishing our goal, both in the Genzyme community and in the rare disease community. I hope you all feel the sense of pride and achievement that I do – a feeling that has nothing to do with how many miles I ran on Monday or whether I crossed the finish line.
“So from the bottom of my heart, I want to say thank you. As someone who has been honored to be a part of this team, as someone who has watched a close family member lose their battle with a rare disease, and as someone who truly values your dedication, sincerity and friendship, thank you. Kai”
Derek Gavin, Director of Development, NORD – an e-mail to Genzyme:
“I want to help more towards next year’s Marathon event. If the intent was to weaken the event, then in my opinion they failed miserably. The resolve of Bostonians is such that next year’s event will be stronger.”
Genzyme Boston Marathon Team Member David Cunningham, Sterile Fill Finish, Waterford, Ireland – an e-mail to the Marathon Team:
“I feel blessed to be chosen to run as part of the team last Monday, It was a weekend I will never forget for all sorts of reasons, but as Phil said in his post and Kai in her e-mail, we should remember all the good things that came out of the process, all the happiness and joy we gave ourselves, our patient partners and the extended Genzyme Running Team…that is priceless and that is something that cannot be taken away.
“You all made us feel so welcome during the lead up to traveling over and our time there, it seemed that one of you was always checking in with us to make sure we were ok and had something to do, or did we need a lift to attend one of our many enjoyable get-togethers…it was a very special few days for us and I feel we made many new friends in the process, ones that I hope to meet again soon.
“It was a pity that we did not get to meet up again afterwards, I was looking forward to hearing everyone‟s story of their race but it was not to be. I feel real sorry for those that did not get to finish, that must have been awful, there is always next year, I would imagine the BAA will give free entries to those people, it would be the right thing to do.
“For those that do not know, my patient partner, Ryan, has been released to return home to Waterford tomorrow. Great excitement here as this has come out of the blue, basically he is the first ALD patient to get such a response from a bone marrow transplant operation. The results of tests are showing that his quality of life may be extended beyond any previous estimate due to this response.
“Both Cian and I are meeting the boys with their parents next week sometime, it feels like I know them very well at this stage but we have not actually met as Ryan has been receiving treatment in Minnesota since last December. I cannot wait to meet him and I will keep everyone posted on his recovery.
“Thank you GRT and Thank You Boston for such a great few days. David”
An e-mail from Erica, one of the patient partners, to the Boston Marathon Team:
“I know I didn‟t meet everyone on this email but for the many that I did I am so thankful to have spent a glorious weekend with families and individuals who “just get it” and who I just didn‟t have to explain myself or really my disorder to! THANK YOU! You guys are my family, my friends, the ones who get what rare represents and who get that we both are and we are not our rare disorders; they are a part of us but not who we are. There is nothing that beats being w others who “just get it”!
“I hope to be able to come next year to cheer “our team, our family” and to remember so many who gave so much on Monday during such sad events. Thank you, Erica”
Links to other blog entries about the Boston Marathon Team experience:
How do I get involved?
See the photos from the dinner, breakfast and Mile 14
Thank you to photographers David Parnes and Doug Levy, who took photographs at all of the events around Marathon weekend. Visit http://davidparnes.zenfolio.com/marathon, and the password is: gzmarathon You can download any or all photos: click on any image to view it large, then mouseover, one of the boxes will say “download”. Then just choose “original” or “all available” and your download should begin automatically.
Last Tuesday night, I was honored to attend the NORD Gala with fellow team members Kai and Kristen. The Gala celebrated 30 years since passage of the Orphan Drug Act and included moving speeches from some of the most influencial leaders in the rare disease community. I was very fortunate to have had the opportunity to say a few words about our team and thought it was worth posting my speech.
