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I’m Lucky

Posted in Boston, Fundraising, work, tagged , , , on April 11, 2013| 1 Comment »

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

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Facing Forward

Posted in Cancer, Decisions, family, recovery, tagged , , , , , on March 17, 2013| 6 Comments »

I haven’t posted in a while for several reasons: We were away; I was sick, including while we were in Florida; it’s been crazy busy at work both before I left and since I got back. But I guess the real reason is I haven’t known what to say. Or I should say, I don’t like what I’ve been feeling and hate being negative.

I’ve been having a really hard time with this anniversary. Last Thursday was one year from the day I found the first lump, and this Wednesday is the anniversary of the diagnosis. And I have just been living with this heavy dread, constantly fighting off tears, and in this just dark place. I hate to be that way. I slept till noon yesterday, and only woke up because Nick kissed my forehead to tell me he had great deli sandwiches in the living room. So I moved to the couch, had a few bites, and vegged back out. The only reason I got up at all was because we had a Running for Rare Diseases fundraiser and I try to never miss those. So I rallied for a few hours, but then went home and crashed again.

I woke up in the same funk. It’s been like living that time over and over – only this time it’s actually been worse, because I know the outcome. Last year I was out drinking and having a merry time with my cousin on St. Patrick’s Day, not thinking that the biopsy would actually come back cancer. This year I moped around the apartment. Let me tell you, the emotional scars are so much worse than the physical ones… I’m dwelling and I despise that. So I’m done. I can’t do this until Wednesday or I’ll go crazy.

So what? So what if it’s the anniversary? So what if it was a hell year? So what if my life is completely different? So what if it will never really be over? What is crying over it actually going to do? Nothing. I have to stop thinking about the past and focus on the future. Or at least start living in the present again. I may not really like everything about my current reality, but at least I’m here. I lived through it. I made it through surgery and chemo and radiation. And I’m recovering. My hair is growing back – strangers no longer see me and know I had cancer. In a few months I can have my implant surgery. Eventually I’ll feel like a normal girl again.

It could be so much worse. I am lucky. I know that. Blessed. And I am thankful, so thankful… Speaking of thankful, thanks to all who joined me in Florida last week – even those I only got to see for a few minutes! Nick, Tara, Kevin, Mike, Steve, Kelli, Hudson, Holden, Shannon, Jack, Julian, Janie, Monique, Dad, Maggie, Mom, Mark, Jake and Kacie (and congratulations on your engagement!!!)… it really was a great, relaxing time. And now I’ve done the requisite celebrating and can move on.

I’m going to do my best this week to stay focused on the future, and leave the past behind me. An anniversary is just another day. It is not happening all over again, so no need to keep reliving every moment over and over again in my head. What’s done is done and I have come a long way from then. No more mourning who I was – time to get back to getting comfortable with and accepting the new me. She’s not that bad, and hey, with a little time and attention, I can make her that much better…

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Running for Rare Diseases

Posted in Boston, connections, Fundraising, work, tagged , , , on March 1, 2013| Leave a Comment »

Today was Rare Disease Day around the world. It’s a day about raising awareness of all the approximately 7,000 rare diseases that affect nearly 30 million Americans. What is considered a rare disease? In the U.S., any disease affecting fewer than 200,000 people is considered rare. And because they are so rare, even many doctors don’t know much about them, and therefore many people are misdiagnosed – and therefore mistreated – for years. Learn more by visiting www.rarediseaseday.us or by watching this video. Or for a very personal account, visit my friend Monique’s blog about her experiences with Pompe Disease.

I met Monique during my very first month working at Genzyme, two years ago. She visited to share her story with employees, and we were all so impressed with her energy and determination for advocating for people with Pompe. And she made us realize how important what we do every day is to our patients. Genzyme is a very special company. It’s been developing and making therapies for rare diseases for more than 30 years now. For many people, their disease would have no treatment if it wasn’t for Genzyme.

What really makes the company is its people – and there’s a special group there who take the patient connection to the next level: the Genzyme Boston Marathon Team. The team has grown from a small grassroots effort by a few Allston employees to now an international team with 17 runners. Still completely employee driven, the team has increased not only its runners, but its ties with the patient community through an increased partnership with the National Organization for Rare Disorders (NORD) and by pairing each runner with their own patient partner. Great, lasting relationships are built out of these partnerships. Something that just doesn’t happen at other companies with their customers.

A major part of the team’s focus is raising money for NORD, through various fundraisers. They are always FUN fundraisers, and ’tis the season right now! And they are open to everyone, so join us whenever you can! I will post various ones as they come up – particularly watch for the fabulous online silent auction in late March. Here are a few:

  • Jessi’s VIP Beer Tasting Event – “The word on the street is that the brand new Harpoon Beer Hall is a wicked awesome place to have a good time. You are invited to a private, narrated beer tasting at a VIP room in Boston’s finest brewery. Harpoon Brewery 306 Northern Avenue, Boston, MA 02210 Wednesday, March 6 … 7:30 p.m. – 9 p.m. Not only is this the most fun you’ll have on a Wednesday night all year, but you’ll be supporting a good cause – the National Organization for Rare Disorders (NORD). Reserve your spot on the guest list today by donating $20 directly to Jessi’s FirstGiving page (http://www.firstgiving.com/fundraiser/jessicacolund/bostonmarathon2013). All proceeds will benefit the National Organization for Rare Disorders (NORD) and my epic Boston Marathon adventure.”
  • Andrew’s Bowling for Rare Disorders – “I am hosting a bowling fundraiser at Jillian’s Boston to support the National Organization for Rare Disorders (NORD). You will get two hours of free bowling, tasty appetizers and a raffle ticket.  We will also have some great raffle prizes including gift certificates to local restaurants. Please come to learn more about NORD, meet new friends and socialize while supporting a great cause. For the 5th year in a row I will be running in the Boston Marathon raising awareness about rare disorders and running on… behalf of Kristin, who has a rare disease called Cowden’s Syndrome. Jillian’s Boston 145 Ipswich Street Boston, MA 02215 Reserve your spot on the guest list today by donating $25 directly to my First Giving Page – http://www.firstgiving.com/fundraiser/andrew-scholte/bostonmarathon2013“
  • Kai, Jen and Colleen’s Raise a Glass for Rare Diseases “March 16th at the Sherborn Inn in Sherborn, MA.  We have collected some pretty great silent auction items that we’re excited to share with you.  You’ll have a chance to bid on Sox/Yankees tickets, a baseball autographed by Red Sox closer Andrew Bailey, a beautiful canvas photo from photographer John Fischer, a massage from MacMed Spa, a basket of designer hair products from the Anthony Fredrick Salon, tickets to a taping of Late Night with Jimmy Fallon, a $100 gift card to J. White Automotive, and much more!  Plus all guests will receive a gift bag containing items from NORD, Genzyme, and some of our wonderful sponsors.  There will also be wine tasting from 6-8pm, and some great appetizers.Tickets are $35 each. ” If you’d like to purchase tickets, please go to any of their FirstGiving pages: http://www.firstgiving.com/fundraiser/colleendalton-petillo/bostonmarathon2013 , http://www.firstgiving.com/fundraiser/kailenesimon/bostonmarathon2013 or http://www.firstgiving.com/fundraiser/jentedstone/bostonmarathon2013.

Not able to attend a fundraiser? There are plenty of other ways to support the team:

And no, I will not be running a marathon any time soon! I am part of the Genzyme Running Club, and finally signed up for what I am praying will be my first 5k back (don’t want to jinx it): the BAA 5k on the day BEFORE the Boston Marathon. I am just a very big cheerleader for the team and love supporting them by helping with fundraisers and any other ways possible. They inspire me, as do their patient partners. They are a fabulous example of living the Rare Disease Day motto: “Alone we are rare. Together we are strong.”

So yes, back to Rare Disease Day! It was a great day, marked by our second annual relay race, and this time went international, with a virtual handoff from Ireland to Framingham. Folks then ran in multiple legs, 26 miles in total, from Framingham to Cambridge. The last leg was also the biggest, with more than one hundred people running from our Allston facility to Genzyme Center. It was awesome to cheer the employees, lead by a visiting patient, who spoke with employees before joining the relay, as they set out to complete the relay and raise awareness of rare diseases. The spirit of the original core Marathon Team has reverberated throughout the company, and is really building our rare disease community, as more and more people are, quite literally, running for rare diseases!

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