HUNTERSVILLE – In the intricate network that constitutes a human body, there are trillions of cells. In each cell, there are billions of base pairs of DNA, consisting of short sections of genes.
The DNA from one human cell, stretched out, would be roughly six-and-a-half-feet long, about the average height of an NBA player. All the DNA from just one human linked together could wrap around our solar system, twice.
And in that vastness, the tiniest of clues about what causes a particular cancer – why one individual’s system reacts differently, how a slight mutation can have devastating results and what connections there might be among patients – can be hidden in the edges of just one of those virtually endless streams of submicroscopic pieces. Or, just as likely, masked in a mysterious void discovered only, like a black hole, because nothing else is there.
That’s medical research. A slow, methodical, formulaic approach designed not necessarily to find something, but to rule out all others until one option remains. It is, understandably, frustrating for those expecting immediate results. It is, unfortunately, terrifying for those desperately seeking hope. But it is, unavoidably, the only proven path to a cure.
And it is the road we’re on to learn more about ocular melanoma, an extremely rare cancer that has impacted a statistically high number of people with north Mecklenburg ties.
An ongoing saga
It’s not a simple, quick, 30-second TV news segment or “Law & Order” episode kind of story. There’s not a clear crime, snarling villain, smoking gun and happy ending folded into a neat package. There have been cherished lives lost and others permanently derailed by indescribable, everlasting sorrow. There is ongoing fear of the unthinkable, and growing anguish amid uncertainty.
And while valuable information has been gathered, there are not, as yet, many answers.
On the road to revelation, each sliver of data is valuable. Every fact recorded, every route explored and each possibility dismissed is a step, no matter how small, toward the destination. The key is to keep moving, even when the goal may be beyond the horizon.
It took an international effort and 13 years of work by the smartest people imaginable to complete a mapping of the human genome. And that was to basically provide a starting point for future research.
In north Mecklenburg, the starting point was provided by an OM-connected group of patients and families who never stopped pushing for answers, which attracted the interest and involvement of medical professionals. Through heroic volunteer commitment and dedication, that team helped raise awareness on a statewide, national and international scale.
Eventually, governments got involved and a $100,000 state research grant was provided. Funds were used to collect individual medical, biological and biographical details of patients and their families. And a symbolic contribution was made in order to have DNA from eight local patients included in a comprehensive, OM-focused Columbia University genome sequencing project still in progress.
Future, and financing
The next phase of local fact-gathering involves environmental testing, which will use the last of the current grant dollars combined with financial backing from the county. The $15,000 basic test process will include soil sample collections at four locations around Huntersville (the town was the grant recipient). There’s no guarantee – in fact, there’s every reason to doubt – the random-site, small-scale testing proposed will provide a significant breakthrough. But it will, like analysis of a single cell, represent investigative progress.
In addition, members of the committee and local residents engaged in the OM project continue to push for research in other areas, including water and air testing and analysis of potential electric signal impacts.
“There are a number of things we need to do, go down the list and check things off,” Kenny Colbert told members of the regional committee created to oversee grant expenditures and coordinate research efforts. “Sooner or later, I’m confident we’ll find an answer.”
Colbert and his wife, Sue, who lost their daughter Kenan Colbert Koll to OM in 2014, also spoke about the need for more money to expand the research. And Mayor John Aneralla talked about the “need to keep the momentum going” on a project being closely followed by an early-phase OM investigation in Alabama and the international medical community, a situation summarized by Huntersville commissioner and committee member Dan Boone.
“The whole world is looking at north Mecklenburg to see what we do,” Boone said.
And now north Mecklenburg is looking at Raleigh.
With impetus from N.C. Sen. Natasha Marcus from Davidson and N.C. Rep. Christy Clark from Huntersville, another $100,000 grant for local research is part of the state budget package being debated in the General Assembly. The grant could be applied to additional areas of local research or serve as seed money for a possible N.C. Collaboratory probe of potential cancer clusters.
Incredibly, there is speculation the grant – which amounts to four-tenths of a thousandth of the $24 billion state budget package – could become a political issue.
Marcus and Clark are not only both Democrats – the minority party in both the Senate and House – but Democrats who beat incumbent Republicans (including former Sen. Jeff Tarte from Cornelius, who helped secure the first grant) in the 2018 election.
In a world where medical researchers are not only capable of, but committed to, combing through billions of what amounts to tiny grains of sand to find the speck that could save lives; and where the dedicated efforts of a handful of local residents has garnered national and international attention on their battle against a medical mystery, it’s almost unimaginable that petty politics could stall the progress.