A year and a half ago I joined Genzyme.Â I had heard of the company and knew the name but before I interviewed with them I didnâ€™t know their mission and the passion people have to find ways to help people with unmet medical needs.Â Â I never realized there are more than 6000 rare diseases, most of which do not have therapies or cures.Â There are families among us that are struggling every day to learn what disease they or a family member might be battling.
I interviewed at Genzyme on Rare Disease day and the Sr. Director told me he had to move my interview earlier in the day because he was running a leg of the Genzyme Rare disease relay.Â At the time I was training for a Half Marathon, my first one in 10 years, so when I got back to my car I promised myself that if I got the job I would run in the relay.Â One year later I ran the first leg of the relay and had the opportunity to hear from amazing families and patients who struggle every day with the challenges of no treatments or cureâ€™s to help their loved ones. Â I’m not sure how to explain it but itâ€™s heart breaking and inspiring all at the same time.Â I have had the opportunity to hear from families who have lost children or loved ones and am amazed at how strong they are in the face of so much unknown.Â How they advocate for others and bring a voice and memory to those they have lost.
This year I have taken the step to do even more than run the relay.Â Â I applied to be on the Genzyme Rare Disease Marathon team.Â Iâ€™ve never run a marathon but have been so moved and motivated reading the Genzyme Running team blogs and seeing the amazing ways people have gotten involved that I want to be a part of that.Â I want to make a difference for others.
I have listened to others share the hard decisions and tough choices they have had to make.Â Iâ€™ve seen the struggles families go through when something like this impacts their lives.Â It is overwhelming, isolating and consuming.
I am honored and humbled to be selected as a member of this team.Â I feel like it is where I belong, where I can make a difference.Â Together with my amazing super-duper, awesome family, supportive friends, and wonderful work colleagues I know I can make a difference and give people HOPE!
Thereâ€™s a lot of work to be done.Â Iâ€™ve lots of training miles ahead to prepare for the 26.2.Â Iâ€™m excited to get to know my patient partner and those on the team running to bring more awareness to such a deserving community.
To all the runners, patient partners, family and friends who will be there to support us through this cold New England weather I want to say THANK YOU!Â Training has just begun and I know I am going to need all of your support on those mornings when I get up to run in the dark with my headlamp in this crazy weather.Â Right now Iâ€™m not really worried about the cold or the miles just the skunks in our neighborhood.Â Keep your fingers crossed I donâ€™t get sprayed.
What this is really all about is raising awareness about these diseases and money to support those who are still trying to get a diagnoses.Â We are running to raise money for Genzyme/NORD National Institute of Health (NIH) Undiagnosed Disease Program (UDP) which is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis.Â Â Click on the link to learn more about this program.
If you are able to donate any amount to my fundraising efforts I would be so grateful.Â You can do so on my fundraising page http://www.firstgiving.com/fundraiser/MelissaHalstead/2015-running-for-rare-diseases-team.
Please remember to check if your company does charitable matches. I know ours does and it makes such a difference.
I know not all of you will be able to donate but I can use all the support and encouragement I can get.Â E-mails of encouragement, texts in the early mornings to get me going on those cold morning runs or just checking in to see how things are going.Â If you are a runner I am also looking for running partners, it may be the only time you get to see me until April.Â If you are interested let me know.
If you are interested in learning more or want to follow the whole team you can do so byÂ logging on to theÂ blog, our Â Facebook page, or on Twitter.
Happy Training everyone!
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