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5 Questions: Local man raising money for research of rare disease in Boston Marathon run
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Upper Allen Township

5 Questions: Local man raising money for research of rare disease in Boston Marathon run


Six years ago, Chris Hummel was at the Boston Marathon as a spectator when a terrorist bombing killed five and injured hundreds. He and his family were also there the following year as spectators.

This year, the Upper Allen Township man is putting on his running shoes and heading to the start corral in Hopkinton on April 15 to raise money for a special cause, an organization dedicated to research into the rare disease that affects his son.

Q. What inspired you to run the Boston Marathon?

A. There are many reasons I want to run the Boston Marathon, including honoring the victims of the 2013 terrorist bombings and feeling the thrill of running in the oldest, most iconic marathon in America. But it’s really my son, Will, who was born 13 years ago with a rare disease called Homocystinuria (HCU), who is my primary inspiration. HCU is a rare disease which impacts about 1 in 250,000 people and prevents my son’s body from processing protein properly. If left untreated, HCU leads to devastating consequences. Luckily, he was diagnosed at birth and has been under the treatment of amazing staff from Children’s Hospital Colorado and Children’s Hospital of Philadelphia ever since. Will is doing well, but when a child in the HCU community passed away unexpectedly earlier this year, it was a stark reminder that there is still much work to be done to improve treatment options and ultimately find a cure.

I am excited to have the opportunity this April to run the Boston Marathon as a member of the Running for Rare charity team to raise funds for HCU research. My family and I first became connected with the Running for Rare team back in 2013 when my son was a patient partner for one of the runners on the team. To support his runner and the Running for Rare team, we attended the Boston Marathon in 2013 when the tragic bombings occurred and again in 2014. Spectating was an amazing experience, but I have been drawn to actually run in Boston myself ever since.

Q. How does running for a charity differ from other runners?

A. Well, I hate to say it, but I’ll be slower than other noncharity runners. Boston is one of the toughest marathons for which to qualify and at my age I would have to run a 3:25 marathon to get in on my own merit, which I won’t be able to do. Running for a charity team allows for slower runners to enter by committing to raise funds for many great causes. Last year, Boston Marathon charity runners raised nearly $37 million dollars for various charities, so I like to think that charity runners have bigger hearts but slower legs. In addition to raising funds for a cause that’s near and dear to my heart, my goal is to beat Will Ferrell’s (aka Buddy the Elf’s) 2003 Boston Marathon time of 3:56:12.

Q. How do you prepare for a marathon through the muck and slush of a winter in this area?

A. It’s not easy, but I’d rather run in the cold than in the heat and humidity of summer. The biggest challenge is the icy roads, which either force me to wear crampons over my sneakers or head to the local gym and spend time on the treadmill. This past week I ran 21 miles on a treadmill in two days, which is a personal record. Not fun, but a movie, some NBA basketball, and some TV shows got me through it. I’ve found that complaining about the weather doesn’t help, particularly when one of my Running for Rare team members is Canadian and ran outside even during the recent sub-zero temperatures of the polar vortex. It’s inspiring to know that others on the team are dealing with the same adversities and finding a way to get through them.

Q. What charity are you running for, and what do they do?

A. I am running as a member of the Running for Rare team, which is sponsored by the National Organization for Rare Diseases. NORD, a 501©(3) nonprofit organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. According to its mission statement, “NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.” The funds that I raise are being donated to a research fund at HCU Network America and will be allocated for research into HCU treatment options and ultimately a cure for my son’s rare disease.

Q. How can locals support your run?

A. By joining the Running for Rare team, I committed to raising $6,000 for the team. Of course, I’m motivated because the funds are going to research my son’s disease, but it takes a village to raise that amount. Supporters can go to to make a donation. I truly appreciate the support that I am receiving in this journey. Thank you.

Email Tammie at Follow her on Twitter @TammieGitt.


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