Lawrence, Mass. (July 13, 2017) –Frank Cann, owner of Coffee Cann Café in Lawrence, Mass. and F. H. Cann & Associates, Inc of North Andover, decided the best way to conquer the overwhelming and helpless feelings brought on by news that his daughter’s fiancé was battling pulmonary hypertension (PH), a progressive, debilitating and life-threatening disease, was to fight back.
Weeks after he proposed to Kara Cann, Ernesto Benscome learned what doctors had told him for two decades was asthma was in fact, PH. Common symptoms of PH include shortness of breath, fatigue and chest pain and consequently, the disease is often misdiagnosed. This leads to delays in proper diagnosis and treatment, costing patients valuable time. PH can present alone or with other illnesses, including congestive heart disease, connective tissue disorders, COPD and many other diseases. It affects infants, children and adults of all races and ethnic backgrounds. Without treatment, median age of survival for those with pulmonary arterial hypertension (PAH), one form of PH, is only 2.8 years from the time of diagnosis. However, with early and accurate diagnosis, treatments can extend and improve the quality of life for many living with the disease for decades.
Cann will share the story of how he channeled his love and compassion for Kara and Ernesto into activism and advocacy, Saturday, July 29, at PHA on the Road in Providence, R.I. The free Pulmonary Hypertension Association (PHA) day-long education, networking and support event is open to patients living with PH and associated conditions, as well as their loved ones. As the nation’s leading PH organization, PHA delivers integrated patient and health care professional programs that advocate for patients, catalyze research for a cure, empower PH patients and caregivers, and enhance patient care.
Soon after his research about the disease led him to PHA, Cann formed a volunteer advocacy group called Team Cann-Do Phighters. Cann and his wife, Sheri, their daughter and soon-to-be son-in-law, along with their son, Justin recruited close family and friends and members of Bencosme’s care team at Boston’s Brigham and Women’s Hospital to send emails and make phone calls to their members of Congress. The team urged their representatives to cosponsor H.R. 3520, the Pulmonary Hypertension Research and Diagnosis Act. After receiving one of the calls, local Representative Diana DiZoglio drafted a similarly worded state-level bill, H 4120, requiring the Commonwealth to establish a PH task force to monitor and report on advances in research, transplantation, public awareness, health care delivery and improvements in early and accurate diagnosis.
Along with continuing the push for legislative support, Cann hosted a month-long “Coffee Cann” fundraiser at his coffee shop, which pulled in more than $600. It was enough inspiration for him to say “yes” when PHA asked him to chair the inaugural Boston PHA O2 breathe walk. His team raised $11,000.
Soon after the Boston PHA O2 breathe walk, Benscome and Cann’s daughter became husband and wife. This spring, Cann furthered his commitment as well by accepting an invitation to join PHA’s Board of Trustees. The appointment came on the heels of Massachusetts Governor Charlie Baker signing into law the first-ever PH bill. Cann serves as one of the inaugural task force members, along with Bencosme, David Matthew Platt, M.D., Bayer U.S. LLC; Patricia Toro, M.D., a representative of the Massachusetts Association of Health Plans; Thomas H. Ebert, M.D., Fallon Community Health Plan; and PH specialist Aaron Waxman M.D., and PH researcher, Laurie Lawler, R.N., both from Brigham and Women’s Hospital.
In addition to hearing Cann’s story, PHA on the Road participants will take part in interactive presentations, educational sessions and networking opportunities. PHA on the Road provides participants with complimentary breakfast, lunch, childcare and parking. The forum takes place 8 a.m. to 5 p.m. at Crowne Plaza Providence-Warwick (Airport) 801 Greenwich Ave., Warwick, RI. To register for the event and to learn more, please go to https://phassociation.org/ontheroad/providence.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.