Over 30,000 people will run 26.2 miles in the Boston Marathon tomorrow and CHI is in awe of all the runners, but there is one in particular we are especially focused on and proud of. Melissa Halstead is running as part of the Genzyme/NORD Running for Rare Diseases Program (RFR) and she is running for two very worthy causes. She is running to raise awareness of the condition, congenital hyperinsulinism (HI) and the need for early diagnosis to reduce brain damage and death from the condition. She is also running to raise funds for the Genzyme/NORD NIH Program, the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. These two caused are interconnected because they both focus on the need for early diagnosis.
To raise awareness of HI, Melissa has a patient partner, Christopher, who has HI. Along with his parents, Anne Burtenshaw and Ed Johnson, and two brothers, Christopher has provided Melissa with great encouragement as she has trained, and will cheer Melissa on tomorrow as she runs in the Marathon. Melissa, Christopher and their respective families have become a mighty force in raising the profile and needs of people living with rare diseases.
This program is an excellent example of the value to CHI of joining with rare disease umbrella groups like NORD. By joining with NORD at the Boston Marathon, we gain social media exposure and this exponentially increases awareness of HI. CHI is also able to help raise the profile of the needs of rare disease patients who don’t have a patient organization and are desperately seeking a diagnosis and treatment.
Below we interview Melissa and Anne and share some beautiful photos of them and their families.
Julie: Why are you running in the Boston Marathon on Monday?
Melissa: I never realized, until I started at Genzyme that there are more than 6,000 rare diseases, most of which do not have therapies or cures. I interviewed at Genzyme on Rare Disease Day and the Senior 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. At the time I was training for a ½ 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. 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 cure’s to help their loved ones. I’m not sure how to explain it but it is heart breaking and inspiring all at the same time. I’ve 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. How they advocate for others and bring a voice and memory to those they have lost.
A long time ago I found a magnet that had a quote on it that spoke to me. It said “One person can make a difference, and everyone should try.” John F. Kennedy. I truly believe each one of us can make a difference and I do my best each day to live this way.
Julie: What kind of work do you do at Genzyme?
Melissa: I provide professional development to our managers and leaders at Genzyme through workshops and training programs.
Julie: You sound really busy with your work. How did you find time to train for the Marathon?
Anne: I have an amazingly understanding husband, daughter and boss. I would get up early in the morning during the week or sometimes I would run at lunch. When I could I would attend team runs on the weekends. It always made it easier to run in the snow and cold when I did it with the team.
Julie: What is your inspiration?
Melissa: All of you are my inspiration. I can’t imagine what each of you has gone through and how you stay so positive during such difficult times. My team is also an inspiration. Each team member has put so much into training, fundraising, and building lifetime bonds with their patient partners. It is truly amazing to be a part of it.
Julie: Your family has been participating in RFR for 3 years now. What kind of impact has it had on your family?
Anne: Our participation as a patient partner family with RFR has been nothing but great. Living in Hopkinton, the town the Boston marathon starts in, is a lot of fun on marathon weekend. The town is buzzing with energy and inundated with visitors. Being involved with RFR has allowed all of us to participate in a very positive and direct way. All 3 of my sons are learning about giving back to the community, empathy towards others and we have made some wonderful connections with our running partners and all the team members.
Julie: What does it mean for Christopher?
Anne: For Christopher I think having these connections has been very special, especially as he grows older, and more insightful, it has been a real confidence builder.
Julie: Why do you give so much of your time to volunteer for this program?
Anne: We love being able to help out with RFR as we feel it is a great way to represent CHI and spread awareness about our disease and especially pushing for early diagnosis. We also feel that this is not only helping our disease but many others as money raised goes to the NORD/Genzyme fund for the NIH Undiagnosed Diseases Program.
Julie: Tell me a little about Melissa.
Anne: We have been fortunate to have had 3 fantastic HI running partners. Melissa lives in Holliston which is right next door to Hopkinton. She and her husband Mark have a daughter Abigail. They are a lovely family. Melissa is very passionate about making a difference and as you would anticipate being a marathoner, she is very driven and dedicated. She and Christopher have made another nice connection. Christopher gave Melissa a small red glass heart when we first met her. The little red heart has traveled many, many, many miles during Melissa’s training, through rain and sleet and snow, we loved seeing posts on Facebook and Instagram of Melissa with the little red heart.
