CrossFit TILT Raises More than $30k for NKH Crusaders
Members of CrossFit TILT in Waltham, Massachusetts banded together on February 11 to support an important nonprofit organization, NKH Crusaders. They formed teams and completed a marathon row while raising more than $30,000 to fund lifesaving research.
An important detail: Nonketotic hyperglycinemia (NKH) is a rare disease that affects one out of every 76,000 children. NKH causes severe seizures and developmental delays, requiring the children to have 24/7 in-home care.
- According to FoundationNKH.org, around 80 percent of babies will not live beyond the neonatal phase while “most children with severe NKH are not expected to live past their fifth birthday.” Additionally, many babies with mild NKH are not expected to reach adulthood.
- NKH research does not receive funding from government grants or pharmaceutical companies. Friends and families of those affected by the disease are the ones that have footed the bill.
NKH Crusaders has stepped in to provide support. This 501(c)(3) nonprofit organization has partnered with the University of Notre Dame’s Boler Pargesian Center for Rare and Neglected Diseases.
CrossFit TILT got involved after NKH affected someone close to them. Jack Urban, a family friend of affiliate member Joseph Rioff, was born in 2021 with NKH. The affiliate members wanted to provide support and raise money that would go directly to NKH research, so they used the marathon row as the opportunity to do so.
- The event began at 8 AM on February 11 as teams of four, five, or six gathered by their Concept2 Rowers at TILT Sudbury. They then set out to row 42,195 meters. Those that could not participate used the opportunity to make donations and cheer on the participants.
- There was no required cost for those interested in showing their support. Though they could make a $20 donation to help fund the research. Rioff agreed to match up to $2,500 dollars.
Rioff: “Almost two years ago my friends Joe and Molly Urban learned that Jack, their first-born child, was diagnosed with Non-Ketotic Hyperglycinemia, a genetic disease that causes seizures and severe developmental delays. It is a rare disease because of the high mortality rate, and an orphaned disease because it’s too rare for pharma to fund research towards a cure. The message from one of the world’s leading experts is that the science to cure NKH is there, but the funding is not.”
- “That is completely unacceptable to those that know a family affected by this disease and compelled me to ask my ‘Tilt Fam’ to step up and join me in funding NKH research. The support was overwhelming: nearly 250 people came together from Tilt and other Boston-area gyms, in teams of four to six, to row a marathon.”
- “In four hours we shared tears, laughs, hugs, and perspective and we raised $30,000 in support of NKH research. My greatest hope is that the ripple effects from that event will continue to spread because we can make a change. We have to. We can prolong and save lives if our communities want to.”
Get involved: The marathon row is complete, but there are still opportunities for people to show their support for Jack Urban and NKH research. CrossFit TILT has organized a GoFundMe campaign, which had an initial goal of $10,000.