Margaret will turn 58 in December 2018. Hers has been a life of soaring triumphs as well as deep despair. Misdiagnosed at age 14 in 1974, with NF1 she was correctly diagnosed at age 40 with NF2.
Her life has been filled with wonderment. Growing up in the United States at the New Jersey shore, she sailed a Sunfish competitively, swam, fished, waterskied, surfed, and kayaked. No genetic disorder was going to stop her from having a fantastic childhood.
Margaret graduated from a small college with a degree in Biology. Her competitive days as a child sailing in races carried into her college years. She graduated #1 in her class. Following graduation, she began work as a research scientist, at various academic centers of excellence, including Temple University and the Hospital of the University of Pennsylvania (HUP). Her career began looking at the molecular basis of schizophrenia as well as the biology of lung disease and atherosclerosis. After her stint in academia, Margaret worked for Bristol-Myers Squibb for several years. Soon tiring of a big pharmaceutical company, Margaret went to work in Long Island, NY for a small pharmaceutical company called OSI Pharmaceuticals. It was here that she found her calling. focusing on the biology of cancer. As part of a team she helped discover an anti-cancer drug known as Tarceva (erlotinib). In 2005, NF2 forced her to retire from her dream job.
After retirement from the pharmaceutical industry, Margaret threw herself into NF2 charity work. She volunteered for NF2 Information and Services. Her role was as a scientific advisor and sometime editor for the education charity. She continues to volunteer for NF2 causes. She is now proud to volunteer for NF2 BioSolutions. She also runs a small group on Facebook, called “The Science of NF2”. Her hope is to help other NF2 patients learn as much as they can about the science behind NF2, so they can be well-informed patients. She firmly believes all NF2 patients should be educated about their own disease. This will make them more “proactive” in their own care.
Margaret was lucky to meet her soul mate, Henry Hipp in 1993. Though they made the difficult decision not to have children, together they have enjoyed their nieces and nephews as well as the children of close friends. They have lived a full and prosperous life. They enjoy going to see live music at various venues throughout New York and New Jersey. Margaret and Henry love live music so much, they continue to go see live music – at the ripe old age of 58! Margaret does not let her NF2 stand in her way – ever.
An avid reader, she used to read over 100 books a year, with historical fiction and biographies her favorite. Sadly, NF2 has taken her ability to concentrate on a book of any kind. She has not read a book since her first surgery in 2002 at Mount Sinai in New York City. She can, however read science literature and tries very hard to stay current with NF2 updates and the possibility of a cure using gene therapy.
Do not mistake Margaret’s charmed life as one that NF2 hasn’t affected deeply. She has known extreme pain, cannot walk well at all and has had so many tests (MRIs two times every year) in addition to CT scans, and PET scans. But she prefers to look on the bright side. At her age, she still has a little bit of hearing left. Many NF2 patients are deaf and in wheelchairs.
Recently she learned her NF2 mutation is a splice-site. She was very relieved. Splice-site mutations lead to a “moderate” case of NF2. She cannot bear the thought that so many in the NF2 community die at an early age. She was eager to have her story shared. NF2 is not necessarily a “death sentence”. She’d like to let younger patients with NF2 know a full life is possible. She also stresses the importance of getting care for NF2 at a specialty center, like the excellent one at New York University, Langone in New York City. All of her many doctors are networked. She cannot abide the thought that many in the NF2 community do not have access to an NF2 clinic, though she is happy to know many NF2 patients make the trek to specialty centers such as the National Institutes of Heath (NIH) in Bethesda, Maryland in the United States. NF2 patients the world over seek care at the NIH.
If Margaret’s life can be summed up, it has been one of highs and lows. As long as she is still alive and mobile she will continue to help NF2 patients in any way she can. She believes that reaching even just one patient with NF2 to help them become proactive in their care makes all her efforts worthwhile. She is not planning to go anywhere anytime soon, however. When she is at the end of her long life, she will die with a smile on her face.