Wednesday, December 2, 2009

Looking Forward to 2010!

This past year at Camp Good Days has been a great success, filled with many special memories, as we celebrated our 30th Anniversary Year. As we now enter and celebrate the Holiday Season, we are trying to plan for the upcoming year, facing some uncertainty and challenges for sure, but completely committed to continuing to be the best system of support for children, adults and families whose lives have been touched by this horrible disease – cancer.

Our 30th Anniversary Year celebration will culminate with a beautiful and poignant television show, produced by Frank Contestabile and John Brown at Frontline Advertising, and narrated by longtime friend to the children of Camp Good Days, Candice Bergen. 30 Years of Courage will air in the Rochester area on Saturday, December 12, 2009 at 7:00 PM on NEWS10NBC, 13WHAM TV and WROC TV-8, and at 7:30 PM on FOX Rochester. The show will also be available On Demand from YNN Time Warner Cable. We are also in the process of making some updates and changes to our website (www.campgooddays.org) with enhanced capabilities for video so we hope to be able to have all or portions of the show available on the site in 2010.

Like others, Camp Good Days must continue to change with the times. When I started Camp Good Days in 1979, and a child was diagnosed with cancer, the best a family could hope for was that the doctors and nurses would be able to keep their child free from pain and help them to prepare for what was almost inevitable…the death of their child. Things are much different today, as we have a better understanding of cancer and when a child is diagnosed now, we throw everything at them, in terms of treatment, including the kitchen sink. These children are living longer and some beat their cancer, going on to live hopefully cancer free and what will be long and prosperous lives.

Some, unfortunately, pay a horrific price for their survival and can never put their battle with cancer behind them. The evidence of their battle is prominent and oftentimes because of their battle and the treatments, they are not able to keep up with their peers, are unable to obtain driver’s licenses, or career paths that many of us take for granted. Camp Good Days has become a key part of the long term survivor’s social life and we are dedicated to meeting the needs of this ever-growing population.

There are also those that still lose their battle with cancer and Camp Good Days will continue to be there to meet the needs of the parents and siblings, helping them through this terrible time.

With the wide variety of programs and services available at Camp Good Days, we will continue to be there for the many populations we serve and who need us. But, we need help. The lifeline of Camp Good Days has always been and continues to be the hundreds of volunteers who give so much of their time and their love and the generous contributions we receive to help fund our many programs. In order to keep the two promises I made 30 years ago – that Camp Good Days would not be a bureaucracy, but would be an organization that truly made a difference, and that all of the programs and services would be provided free of charge for the participants – we have to do the best job that we can to secure both the monetary donations and service of volunteers to support our programs.

I am excited that during 2010 we will continue working to find some of the answers that have been eluding us, in the war on cancer. More than 564,000 Americans will lose their battle to cancer this year and I hope that once Congress gets through the Health Care Reform and finds a way to somehow resolve the two major military conflicts we are involved in, that we will be able to pick up where we left off this past June with the 29th Congressional District Cancer Summit. Our goal is to help the current administration follow-up on ways to defeat this devastating disease. While we made some significant findings at the Cancer Summit, we also realized just how much is still to be done, but I am confident and committed to finding those answers!

I am pleased to report that as we end our 30th Anniversary Year and head into a new year, Camp Good Days is still a very strong and viable organization. This past October, Camp Good Days was once again awarded with the coveted Four-Star Rating from CharityNavigator.org for sound fiscal management. We are committed to our ability to adapt and adjust our programs and services to best meet the needs of the many populations we serve and to improve the quality of life for children, adults and families whose lives have been touched by cancer.

Wishing all of you a joyous Holiday Season and a New Year filled with good health, peace, happiness and much love!

Wednesday, September 2, 2009

CANCER SUMMIT UPDATE

There has been much confusion and debate recently regarding healthcare reform, but the one thing that is obvious is that cancer is quickly becoming the NUMBER ONE KILLER in this country and the world! Right now, if you are 85 years old or younger, cancer is the leading cause of death. More than 564,000 Americans will lose their battle to cancer this year and over the course of the next 14 months, more Americans will die from cancer than were lost in all of the military conflicts of the 20th Century. It is as if one of the twin towers is falling every single day, seven days a week, 365 days a year. In fact, one of every three women and one of every two men will face a cancer diagnosis in their lifetime. Those who are battling cancer and losing that battle do not live in a vacuum, they are our mothers, fathers, brothers, sisters, husbands, wives, grandparents, and as in my case, our children.

They say that timing is everything. Earlier this year, President Obama became the first President since Richard Nixon in 1971, to state that cancer is a disease that touches all of us and WE CAN DEFEAT IT IN OUR LIFETIME! Following his speech, I contacted my Congressman, Eric J.J. Massa, of the 29th Congressional District, and shared with him that now was the time, as the President had opened the door. I am so pleased that on Monday, June 22, 2009, we held the first CANCER SUMMIT at the Camp Good Days and Special Times’ Recreational Facility, where we brought together some of the best doctors, nurses, support service representatives, and cancer patients from the 29th Congressional District. Our special guest was Dr. Brian Monahan, Attending Physician for the United States Congress and United States Supreme Court. Dr. Monahan holds the rank of Rear Admiral and was formerly Director of Hematology and Medical Oncology at the National Naval Medical Center. Everyone left the Cancer Summit feeling good and committed to moving forward with new ideas. We are now in the process of developing the model for other Congressional Districts to use in holding similar Cancer Summits.
This effort requires all of us to help and the one thing that each person can do is stand up and say that we do not want our loved ones taken any longer by this devastating disease - a disease that not only takes so many lives, but seems to humiliate those suffering in the process. When they look back at how we treated cancer, it will be seen as nothing short of barbaric. The options are surgery, radiation and chemotherapy, which is nothing more than poison. It is time that all of us reach out to our network of family, friends, colleagues, and co-workers, and as Americans, contact our representatives with the message that although there is much to be done, we want them to take some of the money (our money) and use it on something that will have an impact now, and in the future will actually save some lives.

I have always believed that government should be there to do the things that people can’t do for themselves. I can’t find the cure for cancer – I need the government’s help. The government should be the funder for research. In this new effort to find the answers, we should look at what has proven successful in the past, with research on some childhood cancers. For example, in the 1950s and 1960s, some forms of childhood leukemia were nearly 100% fatal, but today, those diagnosed with certain forms of childhood leukemia are given an 80% chance of becoming a long-term survivor, and will hopefully go on to live a long and prosperous life. As long-term survival of some childhood cancers is a new phenomenon, we need to follow these success stories for the rest of their lives.

More than 60% of pediatric cancer patients are involved in clinical trials – and that is where the answers are found. It is estimated that only 3 % of adults dealing with cancer are involved in clinical trials. The government should be providing more research opportunities and better educational resources for doctors, as well as sharing information about clinical trials with adult patients.

Currently, the largest amount of research funding is coming from the large pharmaceutical companies and information and results are highly confidential because if research proves to be successful it provides substantial benefit to the stockholders, but should the results prove unsuccessful and word gets out, this will have a negative impact on the company’s stock. However, research that is unsuccessful can be just as important as that which succeeds because it provides additional knowledge and learning.

The laws need to be changed! We need to eliminate the obstacle of patients losing their health insurance coverage because of their participation in clinical trials. In addition, if the government funds the war on cancer, the information will be public and the results will be available to all. We, the taxpayers, will then be the direct beneficiaries of the research investments, efforts and results.

There is still much to be done and it starts with each of us committing to become a soldier in this war on cancer. Please take a few moments to write to your representatives and tell them to take the President at his word and to take the steps to secure the funds necessary to create a Manhattan Project to look at cancer and to finally appoint a much-needed Cancer Czar to help coordinate this effort so that finally the right hand will know what the left hand is doing.

For a copy of the 29th Congressional District Cancer Summit Special Report, please contact Camp Good Days at 585-624-5555 or via email, losborn@campgooddays.org.

Tuesday, June 23, 2009

CANCER SUMMIT A SUCCESS!




As most of you know, we are celebrating our 30th Anniversary Year, here at Camp Good Days, and I have spent much time reflecting on the past 30 years, during which we have served more than 41,000 campers from 22 states and 25 foreign countries. In addition, many of the programs and services started right here have been used as models for other cancer treatment centers and organizations around the world. Everything that we have done and continue to do, here at Camp Good Days, is about improving the quality of life for children, adults and families whose lives have been touched by cancer and other life threatening challenges.

One of my biggest frustrations has been that I still have to attend funerals for campers…funerals that go against the laws of nature, where parents are burying their children, as I did, instead of it being the way that it should be, where children are burying their parents after a long and prosperous life. Just this month, I attended the funeral services for one of my heroes, Bobby Benedict. Bobby was a camper for many years, worked as part of our summer staff at our Recreational Facility, and was someone who truly served as an inspiration for all of the campers he came into contact with. Bobby was a graduate of SUNY Brockport and went on to work with the YMCA in the Boston area. He was only 37 years old when he lost his life as a result of this horrible disease and the subsequent treatments.

This past Monday, June 22, 2009 was a truly special day at the Camp Good Days’ Recreational Facility on Keuka Lake. In his address to Congress this past February, President Obama provided the opening, when for the first time since President Nixon in 1971, he stated that cancer is a disease that touches all of us and we can defeat it in our lifetime. Following the President’s address, I contacted my Congressman, Eric J.J. Massa, who asked me to lead a CANCER SUMMIT, which we did on Monday, for medical practitioners; those who provide support and educational services to cancer patients and their families; those who are battling cancer; and those who have survived their battle.

For me personally, this CANCER SUMMIT is a dream come true and something I have been waiting for, for a very long time. I have long been frustrated that we as a country have not done more to defeat this disease that this year will kill more than 560,000 of our mothers, fathers, brothers, sisters, husbands, wives, grandparents, and children. In the next 14 months, more Americans will die from cancer than died in every military conflict of the 20th Century, combined. Cancer is an equal-opportunity disease that knows no race, gender, nationality or age.

Attendees at the CANCER SUMMIT represented a large cross section of the cancer community, including: American Cancer Society, AROCC, Breast Cancer Coalition of Rochester, Camp Good Days, CURE Childhood Cancer, Finger Lakes Radiation Oncology Center, Hematology Oncology Associates of Central New York, I’m Too Young For This, Interlakes Hematology & Oncology, James P. Wilmot Cancer Center, Lakeside Memorial Hospital, Leukemia & Lymphoma Society, Lipson Cancer Center, Melissa’s Living Legacy, Monroe County Department of Public Health, Rochester General Hospital, Thompson Health, University Hospital, and University of Rochester Medical Center; as well as those personally dealing with cancer.

Working under the philosophy I first saw hanging on the wall at the Fred Hutchinson Bone Marrow Transplant Center, and now hangs on the wall at Camp Good Days, “There is no limit to what we can accomplish, as long as it doesn’t matter who gets the credit,” the goal of the CANCER SUMMIT was to provide the venue in which everyone can come together and discuss ways in which to develop a grassroots effort for our country’s commitment to bringing the war on cancer to the forefront of the public’s attention and the government’s agenda, as well as map out the steps necessary to defeat this disease and to provide the model for other Congressional Districts across the country.

The CANCER SUMMIT kicked off with a welcome and outline of the day’s goals and objectives by me followed by comments from Congressman Massa, who also shared his commitment with attendees that defeating cancer in our lifetime is a priority. The attendees were all captivated and motivated by the comments and remarks from guest speaker, Dr. Brian Monahan. Dr. Monahan currently serves as the Attending Physician of the United States Congress. He is responsible for the 535 members of the House and Senate, as well as the nine justices of the Supreme Court. He holds the rank of Rear Admiral and was formerly Director of Hematology and Medical Oncology at the National Naval Medical Center.

The attendees were treated to a cookout lunch at the waterfront, and then split into three subcommittees for afternoon sessions. The subcommittee of those who are dealing with cancer was led by Congressman Massa; the attending Physicians met with Dr. Monahan; and the community service agency representatives also met as a subcommittee. The entire group came back together and reports from each subcommittee were provided by Congressman Massa; Dr. Richard Constantino; and Mark Cronin, who is the Division Director, Strategic Health Initiatives, Upstate New York for the American Cancer Society.

The CANCER SUMMIT closed with final remarks from Congressman Massa and I, and although we have much to do, attendees left with a sense of renewed hope and success in having taken the first steps in the right direction.

Tuesday, June 9, 2009

CANCER SUMMIT UPDATE


This past Monday, June 8, 2009, I was pleased to join Congressman Eric J.J. Massa at his Pittsford District Office and later that same day at his Corning District Office, to officially announce the CANCER SUMMIT, which will be held at the Camp Good Days’ Recreational Facility on Monday, June 22, 2009 from 10:00 AM – 4:00 PM. We have invited doctors, nurses, social workers, community agency representatives, as well as those who are dealing with and / or have survived their battle with cancer.

For me personally, this CANCER SUMMIT is a dream come true and something I have been waiting for, for a very long time. In 1971, President Nixon wanted to defeat cancer by our country’s Bicentennial in 1976. Here we are now, in 2009, and we have yet to find the answers that have been eluding us in the War on Cancer, which is the most dysfunctional war our country has ever fought. However, in his address to Congress this past February, President Obama opened the door, when for the first time since President Nixon, he stated that cancer is a disease that touches all of us and we can defeat it in our lifetime.

When I started Camp Good Days, I honestly believed that during my lifetime, we would find a cure for cancer and that I would no longer have to watch parents go against the laws of nature and bury their children, as I did, instead of the way it should be, with children burying their parents after a long and rich life. During the past year, I have attended the funerals for nine of our campers.

I have long been frustrated that we as a country have not done more to defeat this disease that this year will kill more than 560,000 of our mothers, fathers, brothers, sisters, husbands, wives, grandparents, and children. In the next 14 months, more Americans will die from cancer than died in every military conflict of the 20th Century, combined. Cancer is an equal-opportunity disease that knows no race, gender, nationality or age. This is not a Democrat, Republican, Conservative, Liberal, or Independent issue, IT IS A PEOPLE ISSUE! President Obama has opened the door and it is the responsibility of all of us to help him successfully defeat cancer, in our lifetime.

We hope this workshop will provide the venue in which we can all come together and discuss ways in which we can develop a grassroots effort for our country’s commitment to bringing the war on cancer to the forefront of the public’s attention and the government’s agenda, as well as map out the steps necessary to defeat this disease. We hope to provide the model for other Congressional Districts across the country.

As a special highlight to our Cancer Summit, Dr. Brian Monahan will be joining us as our Keynote Speaker. Dr. Monahan currently serves as the Attending Physician of the United States Congress. He is responsible for the 535 members of the House and Senate, as well as the nine justices of the Supreme Court. He holds the rank of Rear Admiral and was formerly Director of Hematology and Medical Oncology at the National Naval Medical Center.

As we embark on this journey, I ask that each of you thinks of what you can do to help, as we will bring together the best and will work under the philosophy I first saw hanging on the wall at the Fred Hutchinson Bone Marrow Transplant Center, and now hangs on the wall here at Camp Good Days…”There is no limit to what we can accomplish, as long as it doesn’t matter who gets the credit.”…


The CANCER SUMMIT is free of charge to attend, but space is limited and pre-registration is required. Registration forms may be obtained by contacting Laura Osborn, here at Camp Good Days, 585-624-5555 or losborn@campgooddays.org, or on our website, http://www.campgooddays.org/.

Tuesday, April 28, 2009

CANCER SUMMIT

As I talked about in my last blog posting, I have long been frustrated that we as a country have not done more to defeat cancer, a disease that this year will kill more than 560,000 of our mothers, fathers, brothers, sisters and children. However, in his address to Congress this February, President Obama provided the opening, when for the first time since President Nixon in 1971, he stated that cancer is a disease that touches all of us and we can defeat it in our lifetime.

I am so pleased to announce that my Congressman, Eric J.J. Massa, has asked me to lead a grassroots effort, through an initial workshop, to be held this coming June at the Camp Good Days’ Recreational Facility in Branchport, New York, for medical practitioners; those who provide support and educational services to cancer patients and their families; those who are battling cancer; and those who have survived their battle.

We hope this workshop will provide the venue in which we can all come together and discuss ways in which we can develop this grassroots effort for our country’s commitment to bringing the war on cancer to the forefront of the public’s attention and the government’s agenda, as well as map out the steps necessary to defeat this disease.

As I first saw hanging on the wall at the Fred Hutchinson Bone Marrow Transplant Center, and now hangs on the wall here at Camp Good Days…”There is no limit to what we can accomplish, as long as it doesn’t matter who gets the credit.”…and it is my sincere hope that you will support us in this effort!

Wednesday, February 25, 2009

A New Sense of Hope

Along with millions of Americans, I watched intently as our new President presented to Congress for the first time, his response to the enormous challenges we face as a nation, as well as to spell out his priorities for his first term in office. This was truly an historical moment, as it was the first time in history that an African American male has served as President and delivered his speech with the first female Speaker of House of Representatives, Nancy Pelosi, and his white Vice President, Joe Biden, behind him.

President Obama made full use of his oratorical skills that the good Lord blessed him with, and did what the President should and must do in times of crisis, which is to be the cheerleader for the American people and provide hope. However, the President, nor the members of Congress and the Executive Branch, can overcome these challenges alone. All of us, male, female, young, old, white, black, brown, and yellow, need to do what Americans have always done, put our petty issues aside and come together to face these challenges.

President Obama’s speech was also historical for me, both personally and selfishly, as this was the first time in my memory, since Richard Nixon in 1971, that I have heard a President say that it is a priority to cure cancer in our lifetime! For the past 30 years, I have dedicated my life with the help and support of so many people, to the founding and building of Camp Good Days and Special Times. Over the years, Camp Good Days has served more than 41,000 campers from 22 states and 25 foreign countries and many of the programs and services started here have been used as models for other cancer treatment centers and organizations all over the world.

While nothing we do at Camp Good Days will find a cure for cancer, I have seen what the diagnosis of cancer can do, both emotionally and financially, to the person battling this horrible disease and their family. I have been to more funerals than anyone should ever go to, because of this disease that will kill some 600,000 Americans this year and more than seven million people around the world. One out of every three women and one out of every two men will face a cancer diagnosis in their lifetime and for those under the age of 80, cancer is the leading cause of death.

It has been my dream that during my lifetime, I would no longer have to watch parents go against the laws of nature and bury their children, as I did, and instead children should be burying their parents after a long and prosperous life. After watching and listening to President Obama, I turned off my television and I went to bed with a new sense of hope!

Monday, February 2, 2009

Celebrations & Tribulations

Two-thousand and nine represents a very special year, here at Camp Good Days, as we are celebrating our 30th Anniversary Year…30 Years of Bringing Love To Life! Despite this significant milestone and celebration I had hoped that during my lifetime I would not have to go to anymore funerals where parents were burying their children, as I had to do. I had hoped that things would be as they should be where children would be burying their parents, following a long and fulfilling life.

This past January, during a two-week period, myself and all of us at Camp Good Days had to deal with the loss of three very special campers. Two bright young men, Zach and Adam, were participants in our Young Adult Program and should have had their whole life ahead of them, and Marilla, one of the very special participants in our Women’s Oncology Program, all lost their battle to cancer. This illustrates that while we have made progress over the past 30 years, we still have a substantial way to go in our battle against this ruthless disease, which knows no boundaries. Not only does cancer take your life, but it is as if it has to humiliate you while doing so.

I recall back in the early 90s, hearing the news that a beautiful young lady, who also should have had her whole life ahead of her lost her life to a senseless, horrific act of violence. Jennifer, while a student at St. John Fisher College, had participated in the Annual Dance for Love, an event that supports Camp Good Days, of which the students at Fisher will host the 27th Annual Dance for Love this coming weekend, February 6th & 7th. Upon hearing the news of Jennifer’s death, I felt compelled to do something, because as I will be the first to admit that finding the elusive cure to cancer is very difficult, there must be something that we, as a society, can easily do to stop the senseless acts of violence. So, with the help of many friends and colleagues in Greater Rochester, as we had done with Camp Good Days, we formed the Partners Against Violence Everywhere (PAVE) Initiative. The PAVE Initiative sponsors a variety of programs and activities, such as the Sharing & Caring Program, for children who have lost an immediate family member to homicide; Memorial Services, to remember those we have lost to violence; the Teddi “T” 3-on-3 Basketball Tournament, to provide youth with a positive activity in a safe and supportive atmosphere; and Project Exile, a joint law enforcement and community initiative to remove illegal guns from the streets of our community. According to statistics from the Bureau of Alcohol, Tobacco & Firearms, Project Exile has helped to remove nearly 10,000 guns (pistols, revolvers, and derringers) from the streets of our community, since its inception 10 years ago. One can only imagine the pain and devastation these illegal guns could have caused had they remained on the streets of our community in the hands of those who ought not to have them.

This past weekend, on the last day of January, came the news that one of Rochester’s finest, a young Police Officer who was doing his job to help keep our neighborhoods safe, was shot in the back of the head, and according to reports is fighting for his life. Here again, we have quite a ways to go and this horrible act of cowardice should be a warning to our community about where we are and how far we have to go. We need to combine all of our community’s efforts and resources and deliver one clear message that we will not tolerate this violence any longer. If people are in possession of an illegal gun, this community will send them to prison. NO EXCUSES…NO EXPLANATIONS!

I hope that each of you who reads this looks into yourself for ways in which you can help Camp Good Days and our community this year. Make a commitment to make a difference and please keep the Rochester Police Department Officer Anthony DiPonzio and the children and families at Camp Good Days in your prayers.