It isn’t often that a community volunteer organization gains an opportunity to tell its story and have an impact at the national level. Bravehearts–Friends and Family of Dylan Connelly has just been given that chance.
In a conversation with Pat Connelly, Dylan’s father, late last week, the Press learned that Connelly of Lover’s Lane has been elected to serve a three-year term (with a three-year renewal option) on the board of directors of the National Brain Tumor Society (NBTS), headquartered in Newton. Connelly said he told the society he would be honored to serve, but only if he could do it as a representative of Bravehearts because that would fit Bravehearts’ mission statement: “To honor the life of Dylan Connelly, maintain the Braveheart fellowship, and carry on the traditions embodied by our common values while we lend support to others in need, especially those beset with healthcare crises.” Connelly said he sees his association with NBTS as a connection that will be a “notch up” for the local volunteer group, a way to have a voice at a national level. In addition to holding an annual fundraising bicycle ride and family day, the group can be involved in education and advocacy.
After the first year of the Bravehearts ride and family day in July 2013, which raised money for Dylan Connelly’s wife and three children, the group looked for another recipient for its fundraising. Quite naturally the question came up of whether there was anywhere local that was connected with brain tumors, and Connelly happened to know that NBTS was located in Newton. In the second year of the ride, Bravehearts donated the proceeds to that organization. The CEO of NBTS communicated with Connelly and a connection was formed; subsequently, one of the directors of Bravehearts became a liaison to NBTS.
A disease without treatmeent
Dylan died six months after being diagnosed with glioblastoma multiforme, a disease that Connelly said “comes out of nowhere, nobody knows why” and accounts for 15 percent of brain tumors. Treatment has made no progress in the past 50 years. The current standard of care is to operate and remove as much as 98 percent of the affected tissue. But even then, said Connelly, who works for Vertex Pharmaceutical in Cambridge, it is only palliative. With no treatment, a patient will die in three months; with surgery and radiation and medication, a patient will survive between 12 and 15 months. In Dylan’s case, an operation was impossible because of the multiple tumor centers and the tentacle-like nature of the tumors.
According to Connelly, NBTS advocates yearly in Washington, trying to get Congress to grant them money to allocate for research. A foundation needs about a billion dollars to get the attention of a pharmaceutical company, he said, because the latter succeeds in bringing to market only one drug in a hundred of those they research.
Anyone wishing to know more about Bravehearts or to get involved in some way may contact jude.connelly@gmail.com.
See related article,”Bravehearts fundraiser rides again.”
