by Joyce Graff
I was privileged yesterday to attend the Rare Disease Day celebration at the Boston State House, a series of events coordinated by MassBio and the VHL Alliance as well as Rare Disease United.
Among the many excellent speakers I heard former Boston Mayor Ray Flynn speak with passion about his grandson’s undiagnosed rare condition. I am enclosing a transcript of his talk. Please read it and take to heart that rare diseases can happen to any family at any time. What can we all do to make sure that the next affected family will find the help they need. This is a challenge for all of us, and for our country, to take on as our own. Let’s find the will and the way to created a HEALTH care system that will help Braeden and everyone to maximize their health and their quality of life.
Rare disease Day
February 29. 2014
State House, Boston, MA
Statement by Ray Flynn, Mayor of Boston 1984-1993, Ambassador to the Vatican 1993-97.
Thank you for inviting me to participate in this Rare Disease Day forum at the State House in Boston. I am happy to see so many people here today. My name is Ray Flynn and like you I have been searching for medical help for my 7-year-old grandson Braeden O’Doherty, who was born with a small cerebellum and has a yet undiagnosed rare disease which affects his balance, walking and talking. Yes, just like many families, our journey has had its up’s and down’s. But I have to say that I have never met so many determined parents and concerned doctors as I have along the way.
For thousands of families, the pain of seeing a child or a love on living with a rare undiagnosed disease is a traumatic and life altering experience. They are stunned and in pain and often don’t know where to turn. But in Boston, when sicknesses strike, the parents are able to receive good professional medical help. Families from all over the world come to Boston’s renowned hospitals. We are very proud of our reputation as a “medical center.” In fact, that pride is part of who we are as Bostonians. While serving in state and city government, I’m proud to say, Boston experienced its most expansive growth in advanced medical technology than any time in its long history. I recall approving major hospital expansion projects while Boston’s mayor, sometimes even with valid concerns of neighborhood groups. But we were always able to convince them of our commitment in helping sick and needy people. We kept our promise as a caring city while promoting the “common good.” And the people’s sacrifices resulted in god health care, advanced medical study and scientific research, benefiting people throughout the world. Along with these great medical institutions, our equally outstanding universities and colleges made Boston a very special world-class city.
But the pain that many loving and dedicated parents feel in hearing doctors say that they are unable to diagnose why their child is experiencing the serious health problem that they are struggling with, frankly for me, is not what I would expect in Boston or in the United States. That’s not to say everyone isn’t trying to find a cure for undiagnosed rare diseases, but we clearly need more medical research. Not enough scientific research is being done.
As a boy, I remember hearing doctors tell my mother that my father wouldn’t likely leave his TB hospital, but science and medical research proved them wrong. Because of the hard work of medical doctors and medical research, some of that work done right here in the Boston area, my father and many people like him who worked in unsafe and unsanitary work environments, were eventually discharged from the hospitals for the incurable and returned home to their families. My father even went back to work as a Longshoreman. Later, the union and elected officials passed laws to help make the work environment safe for the workers. As a boy, I saw my friend and neighbor come down with polio and his parents were told he would never walk again. He later played stick ball with us. Again, determined medical research succeeded. As a college student, I remember hearing President John F. Kennedy say that he wanted to put a man on the moon. Unrealistic, critics said. As Mayor of Boston, I saw dying men in Boston hospitals with AIDS and without hope, but we stopped at nothing to find medical help for them. Again, great progress was achieved. The list of challenges gone on and on and the successes grew. Yes, we still believe that nothing is impossible with God and science.
I have seen concerned and frustrated parents in pain sitting hour after hour in hospital waiting rooms, rehabilitation centers, and even at the National Institutes of Health in Maryland, seeking answers and solutions as to why their child can’t work or talk. Why their children keep falling down and getting hurt. I even participated in a worldwide conference and even talked to Nobel Prize scientists, the Pope and medical experts from across the world discuss the hope, promise and reality of adult stem cell nutrition at the first week-long international conference on Adult Stem Cells at the Vatican. I was encouraged by everyone’s determination and concern.
I have spoken to hundreds of groups and thousands of people throughout the world about Braeden and children like him. I talk to their parents and family members all the time. I even coach Braeden’s baseball team in the Challenge League, sponsored by the Teamsters Union, which gives me the opportunity to get to know these special needs children’s families.
We appreciate all that doctors, elected officials, and private research companies are doing in dealing with these quality of life concerns. And we appreciate the outstanding leadership of the Massachusetts Biotechnology Council and the VHL Alliance who are sponsoring this important Massachusetts State House event today.
But the bottom line is, more progress needs to be made for people like Braeden. Scientific and medical research is woefully inadequate. Too many politicians don’t yet consider finding cures for undiagnosed diseases a high enough priority like they did in the past. Maybe that’s because we have not been aggressive enough in convincing our elected officials about this critical issue, and that by working together, we can make a difference.
America is politically divided and that hurts sick and needy people. We no longer have a powerful bipartisan political coalition in Washington like we once had. Doctors at the NIH and the several medical doctors elsewhere, whom I have often spoken with, have acknowledged that our political leaders in Washington and here at the State House, have been unsuccessful in obtaining the necessary level of funding for needed research. The media needs to give more attention to this issue and we need to reach out to more charitable foundations and concerned financial contributors. Frankly, families need more support and advocates need to focus more light on their pain and anguish. We much let them know that they are not alone, and that we will stand with them.
I plead with you parents and all of you here today, to make medical research a concern in our communities and an issue in the upcoming Massachusetts Governs election, with the Legislature, and in the upcoming election for President of the United States. We are all in this together. And we must continue to fight for what is best for our children and our country.
Boston is the best, but is it is not yet great. We should have the best healthcare delivery system in the world. Thousands of people suffer and die each year from diseases like cancer and the heart, while other people like Braeden go through life with physical handicaps and disabilities, while their families are told that no cures have been found for them. We must do more medical research, and promote healthy living like sleep and nutrition.
But I am convinced that Boston can become the medical research center of our country and Boston’s Mayor Martin Walsh can help make this happen. But it will take the active support of our medical community and the leadership by our elected officials in Washington, D.C., and right here at the State House.
We must dream what might be possible.
Ray Flynn is the former Mayor of Boston, U.S. ambassador to the Vatisan, and advocate for people with disabilities.
Photo credit: Boston Globe, from their article
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