The Research Evangelist

When I heard that Dr. Jim Allison won the Nobel Prize the other day, it hit me that for breakthroughs in medical research to happen, we need to have as many runners in the race as possible. It makes sense right? The more scientists we have in the field researching cancer the better chance we have that one (or more) of those researchers in the lab will hit on an idea that will lead to more advanced studies. And the more new studies undertaken by labs - the more runners in the race - the closer we get to having real breakthrough treatments get to patients. Just like in a marathon - the more runners who train and qualify for the race, the more who are likely to cross the finish line. In fragile X, FRAXA Research Foundation has been putting more runners into the race for many years. In early years there was not much known about fragile X. So FRAXA poured millions of dollars into basic research at labs around the world. The idea was that the more brilliant minds in the laboratory we

I often write about the need for funding for cancer research. In order for breakthroughs to occur, researchers need to fund their labs to test their theories. Dr. Jim Allison, from the University of Texas MD Anderson Cancer Center is one of those researchers whose work over many decades was recognized today with the 2018 Nobel Prize in Physiology or Medicine for launching an effective new way to attack cancer by treating the immune system rather than the tumor. Dr. Allison started his research career at MD Anderson in 1977. Trust me when I tell you that he was an early pioneer in immunotherapy. When I met Dr. Allison in 2014 he was just starting to get recognition for his important work. So what we take for granted today - that treatments for cancer include unleashing the body's own immune system to fight cancer - started decades ago. This is why we need to consistently fund research over time. We never know when that next breakthrough will occur. This is not just true in

I have been involved in cancer research and advocacy for many years. I try to never disparage any cancer advocacy groups that raise money to fund research and other programs to help cancer patients and their families. We're all in this together. However, the American Cancer Society (ACS) came out with a recent survey asking "What cancer issues do you care about most? I was so disappointed that lung cancer was not even mentioned as an issue! Here is the survey: My lung cancer diagnosis was in 1998, and I had a positive outcome - no spread to lymph nodes, no chemotherapy - and my lobectomy was difficult but a small price to pay. And I have lived a life of gratitude ever since, so I don't enjoy being critical of cancer organizations that have a role to play. I just get tired of the stigma attached to lung cancer as a smokers disease and when the ACS put out this survey, it totally played right into the stigma. According to the ACS's own statistics , nearly 160,0

On April 7, 2018 over 100 people gathered at Boston Children’s Hospital for a special conference called Success Strategies for Individuals and Families Impacted by Fragile X. It was an inspirational day that included presentations by 2 fragile X researchers, Dr. Craig Erickson from Cincinnati Children’s Hospital, and Dr. Carol Wilkinson from Boston Children’s Hospital. Both researchers are funded by FRAXA Research Foundation , the platinum sponsor of the conference. I am Director of Community Relations for FRAXA, and I invited my friend and artist, Maria Castellano-Usery to join us for the day. Maria started Brushstrokes With Impact™ , a campaign where she merges art, community, and raising money for causes she feels strongly about. Over the course of twenty-eight “Paint-a-Thon” events (which have taken place in Maine, Massachusetts, New Hampshire, and New York) she has raised money for many good causes. At the conference she set up her easel at the FRAXA table and spent the d

I was introduced recently to Lynne Sarnoff-Christensen by her cousin, and my friend Jeffrey Cohen. You see, she makes pottery and well, more specifically she make “bowls of gratitude”. So of course, Jeffrey knew that I would hit it off with Lynne because he knows I live a life full of gratitude. Another friend, Keith Spiro said I just had to buy a bowl – so I did. The idea is to put notes in the bowl about things you are grateful for. So it’s my new thing. I’ve long been a fan of Shawn Achor and I’ve gotten into the habit of writing down things that I am grateful for. So this bowl of gratitude will be where I put my notes. And I will encourage my family to also add their notes to the bowl. We have a tradition on Thanksgiving to go around the table before we dig in to our meal, to share what we are thankful for. We shouldn’t just do this at Thanksgiving! When I called Lynne, she explained her philosophy and I get it: “You didn’t get from there to here without people believ

I have often written about the need for adequate research funding and the challenge researchers have funding their labs. The cancer researchers that I met over the past 4 years consistently told me they spend up to 75% of their time fundraising - between writing grants to the National Institues of Health (NIH) , private foundations and public charities, and meeting with individual donors. Scientists like John Whetstine at Massachusetts General Hospital happily meet with people to talk about their research and John works a lot of hours writing grants. The more time he spends in his lab the less time he has to test new ideas. Another scientist, Dr. Wayne Marasco at Dana-Farber Cancer Institute laments the fact that he could be in the lab making discoveries were it not for the fact that he has to spend so much time writing grants. And in oncology, the chance of receiving an NIH grant is only 10%. Having now spent almost a year at FRAXA Research Foundation , I see that it is no diffe

In 2017, I joined FRAXA Research Foundation, a national nonprofit in Newburyport, MA as Director of Development and Community Relations. FRAXA’s mission is to find effective treatments and a cure for fragile X, the most common inherited cause of autism and intellectual disabilities. I had spent the previous 17 years in cancer education and research, most recently as Vice President of Development at the National Foundation for Cancer Research (NFCR) in Bethesda, MD. While fragile X research was a departure from cancer, I was drawn to FRAXA firstly because of the mission focus on research. The model of funding individual research labs across many different institutions was similar to how NFCR approached researcher: accept proposals from several labs, vet them through a rigorous scientific review process, and select the most promising projects. FRAXA has been putting over $1 million into fragile X research since its inception in 1994, over $26 million to date. Another reason I joined