Margaret Griffin, a kidney transplant recipient who passed away in March 2022 following a
courageous battle with calciphylaxis, is being honored through a new memorial scholarship. Family and friends are also working to increase awareness of calciphylaxis, a rare disorder which predominantly affects people with kidney disease.
Margaret’s husband, Jeffery Griffin, established the scholarship in her memory with the Northern Chautauqua Community Foundation. The scholarship will benefit students graduating from Dunkirk High School with plans to enter the medical field. Special consideration will be given to students planning to study medicine or medical research.
Margaret was a kind and generous person. She was so loved that a coworker graciously and compassionately donated one of her kidneys to Margaret. Because of this generous gift,
Margaret lived another 11 years, continuing to bring joy to her consumers at New York Developmental Disabilities State Operations Office and her friends and family. Margaret’s smile and personality were contagious; she was loved by many, most notably her grandchildren, who called her “Gramma Chicky.” She loved to read and be part of her book club.
The scholarship in her name will help bring attention to a rare and painful disease that tragically took her life.
“Calciphylaxis is a rare and serious disorder characterized by reduction in blood flow to skin tissue due to a buildup of calcium in the walls of blood vessels,” according to the Calciphylaxis Program at the Massachusetts General Hospital. “Calciphylaxis predominantly affects individuals who have advanced kidney disease. The disorder, however, is not restricted to individuals with kidney disease. Calciphylaxis typically manifests with painful skin abnormalities like skin discoloration, a nodule or an ulcer. Unfortunately, individuals with calciphylaxis are at a high risk for skin infection, hospitalization and death.”
Mr. Griffin noted, “It can cause open sores on the body. These wounds are so painful that the patient must take the most potent opioids to make them bearable. Tragically, Margaret could not take the opioids because of the side effects. As a result, she was in pain constantly. The survival rate of this disease is very low.”
An article about Lexi Reed, a young woman diagnosed with calciphylaxis, is online at People.com.
Dr. Sagar U. Nigwekar of Massachusetts General Hospital and Harvard Medical School is working to find effective ways to prevent and treat calciphylaxis. Click here for an article describing his efforts.
“Because it is not a major or well-known disease, getting donations and funding to find the cure is tough,” Mr. Griffin shared. “Margaret’s goal would have been to get the word out and to help in any way she could to help find a cure so this disease would not take anyone’s life or cause such horrible pain.”
Information about the Margaret Sysol Griffin Memorial Scholarship is online at https://www.nccfoundation.org/margaret-sysol-griffin and by contacting the Northern Chautauqua Community Foundation at 716-366-4892 or nccf@nccfoundation.org.