Thursday, August 11, 2016

Cancer Moonshot Needs Your Support


Recently, the presidential nominees spoke at the Republican and Democratic National Conventions, and through the whole process, both nominees talked about issues – some serious and some not at all – but neither of them even mentioned cancer and the toll this horrible disease is taking on our country and our world.

Cancer is not a Republican, Democrat, Independent, Conservative, Liberal, or Tea Party issue – it is a people issue.  Either directly or indirectly, cancer touches all of us. 11,000 Americans die each week from cancer.  That’s unacceptable.  What’s worse is that these people do not live in a vacuum.  They’re our mothers, fathers, brothers, sisters, and friends, or in my case, my child, Teddi.  Cancer in this country is as if one of the Twin Towers is falling every single day, seven days a week, 365 days a year.  Oftentimes, cancer does not just prematurely take one’s life; it seems to humiliate you in the process. 

It is pretty hard to understand how we, as a country since 9/11, have given a blank check to protecting the homeland – to the tune of some 2-3 Trillion Dollars – but if you were to ask someone if they were more afraid of being attacked by a terrorist or going to the doctor and walking out with a diagnosis of cancer, I would venture to say that cancer is the bigger fear.  And it is no surprise that people are in fear of cancer. If you are a woman, you have a one in three chance of being diagnosed with cancer in your lifetime, and if you are a man, your chances are one in two.  Those are NOT very great odds. 

I believe that these odds could be less daunting in the future if we were to reach our goal of cancer being a chronic illness that patients can live with and still have a decent quality of life, instead of it often being a terminal illness.  When we started Cancer Mission 2020 with this goal in mind, we began with a very successful Cancer Summit, for which we brought together cancer patients, and some of the best doctors and cancer service agency representatives.  Following that initial Cancer Summit, three additional Congressional Cancer Summits were held throughout Upstate New York, led by Congressman Tom Reed, Congresswoman Louise Slaughter, and then Congresswoman Anne Marie Buerkle, who were instrumental in bringing awareness to the issues surrounding cancer. These meetings helped bring people together to share ideas on how to reach the common goal of finding a way to defeat cancer. 
  
Out of these summits came the idea that the real answers to beating cancer were going to come from clinical trials.  In the 1960’s and 70’s, parents were being told that their child did not have a high chance of surviving cancer.  Today, with the advances made in research and technology, most parents are being told that their child has a good chance of surviving cancer, and while those children and families still have medical challenges, most of those children appear to have successfully beaten their cancer.  If clinical trials are where the answers are going to come from, it is understandable why we are advocating for them.  65-70% of pediatric oncology patients are active in trials – which is a promising amount – however, the percentage of adults active in trials is 1-3 percent, which is significantly less.  Ideally, the participation in clinical trials will only increase and the important information being discovered from these trials will hopefully help end the dreadful and terminal reign of cancer.

I was excited when earlier this year, President Obama appointed Vice President Joe Biden to lead the Cancer Moonshot effort.  I had such hope that this would finally be more than just lip service and would lead to some true action being taken, and I was pleased to have been invited to, and attended the Regional Cancer Summit, held under the auspices of Cancer Moonshot, at the University of Rochester Medical Center.  To show how much we in Upstate New York are dedicated to this effort, we presented close to 35,000 signatures to Congressman Tom Reed and Congresswoman Louise Slaughter, which they in turn presented to Vice President Joe Biden. 

It is sad how neither candidate took any bit of time during their lengthy speeches to talk about this important effort and share what they plan to do to help defeat cancer, or how they plan to work with Vice President Biden to ensure that this effort continues forward, for the good of all Americans, and people around the world.  We can’t do it alone.  It is time for everyone to stand up and be counted and use their voice and their power to vote to make sure that the nominees for President realize that cancer is something that is important to all Americans.  We want more action and less talk.  We need coordination and we need leadership, and it needs to start at the top, from the White House.

We have the means and the technology to be successful in this endeavor, but we all need to come together to make it happen.  Here at Camp Good Days, we continue to collect signatures for our Cancer Mission 2020 Petition, which supports clinical trials, which are where the answers are going to come from.  If you have not visited our Cancer Mission 2020 website, www.cancermission2020.org, I encourage you to do so, and to sign our petition, and then share it with you family, friends, colleagues, and co-workers. Join us in letting our current and future leaders know that we want finding the answer to cancer put on the front burner.

What greater gift could a President give those of us here in the United States, and people around the world, than the legacy of having made finding the answers to cancer a priority and successfully completing that Cancer Moonshot mission? 

Tuesday, July 12, 2016

Welcoming Invictus to the Camp Good Days' Family


I am excited to share that for those attending Camp Good Days this summer we are welcoming the newest member of our family, an Olde English Bulldog puppy, Invictus.  Invictus will be the third in the line of bulldogs, going back to the reason for Camp Good Days, my daughter, Teddi. 

When Teddi was diagnosed with a malignant brain tumor in 1979 at the age of nine, she underwent a seven and a half hour craniotomy, and when I met with Dr. Nelson following the surgery, he explained that he did the best he could but that they were not able to get it all. Therefore, he suggested to start Teddi on eight weeks of radiation, which would take place Monday through Friday and with that, it would be best for her to finish school at home, with a tutor.  With her brother and sister at school and her home, he suggested it might be a good idea to get a puppy so that she would have something to focus on and take care of.  I went to the library and took out a big book with pictures of all the different breeds of dogs so that Teddi could look through it and pick out the one she wanted.  The next morning she came down and was very proud of herself because she had selected an English Bulldog.

Back then the English Bulldog was not a very popular breed of dog in Upstate New York but wanting to be a good Dad and hold true to my promise, I went over to World Wide News and picked up a copy of Dog World Magazine.  In that I found a breeder in Jamestown and when I called they had one puppy left who was the runt of the litter and already 16 weeks old, who they had named Sweetums. Teddi, her Mom and her sister went to pick up Sweetums.  We had always brought dogs to Camp Good Days and Sweetums was no different, quickly becoming part of the Camp Good Days’ family. Although Teddi died a few years later, Sweetums lived to be 12 years old, the same age Teddi was when she passed away.  For the children at Camp Good Days who are going through their battle with cancer, which can include hair loss, increase or decreases in weight, scarring, or the need for prosthesis, they oftentimes don’t like what they see when they look at themselves.  Pets can be so great and become so valuable because they are not judgmental or cruel.  As the famous quote says, “I want to be the kind of person my dog thinks I am.”

We later got Jordyn who was a part of the Camp Good Days’ family for 10 years and now Invictus, whose name means unconquerable and to me represents the courage of all of our campers.  The inspiration for his name came because earlier this year, Wendy and I had the opportunity to attend the Invictus Games in Orlando, which were started by Prince Harry.  We were able to see the Bronze Medal Game between Denmark and the Netherlands, and the Gold Medal Wheelchair Basketball Game between the United States and the United Kingdom.  Wendy and I both have been to many, many sporting events over the years, but this was truly one of the most inspiring experiences.  To watch the wounded warriors, and their commitment and strength is amazing.  They say that life is 10% what happens to you and 90% how you deal with it.  These athletes all paid a significant price in protecting our freedom and athletes everywhere, as well as the rest of us, could learn so much from them.

Hence, we felt that Invictus was the perfect name for our newest addition and our newest Director of Barketing and we are thrilled to have him join our family at Camp Good Days!

Wednesday, June 1, 2016

Remembering Dr. Klemperer

It is with a very heavy heart that I share with you the passing of Dr. Martin Klemperer.  For those of you who don't know, when it comes to Camp Good Days, we would not be here had it not been for Dr. Klemperer.  Dr. Klemperer passed away quietly at his home in St. Petersburg, Florida, on May 23, 2016.

When I first got the idea for Camp Good Days, in 1979, it was at a time when no one talked about cancer - and if they did, they whispered.  At the time, I was just a Dad in my early 30’s, with three children, when my youngest child, Teddi at the age of 9, was diagnosed with a malignant brain tumor, I became her primary caregiver because up until then my work would often take me away from home, and I wanted the opportunity to spend time with my little girl.  I quickly came to realize that it was not the surgery or the eight weeks of radiation or the chemotherapy that followed.  The toughest part of Tedd's battle, was the loneliness, as Teddi was the only child in her school and in our neighborhood dealing with cancer.

One morning as I was getting ready to go to work, I saw a segment on the Today Show about Dr. George Royer a pediatric oncologist in Kalamazoo, Michigan who had started a residential camping program for the patients in his clinic, so that they could see their doctors and nurses, who were often poking and prodding them with tests and treatments, and many times caused them pain and discomfort, away from the sterile environment of the hospital.  I reached out to Dr. Royer and invited him to come to Rochester and I was thrilled that we had more than 100 people (mostly friends) attend his presentation at the Rochester Academy for Medicine.  As I was taking Dr. Royer to the airport, following his presentation, he expressed that he had no doubt we would be able to raise the money we would need to start the camp, and we would be able to secure the many volunteers, and God knows we had the children; however the toughest challenge was going to be finding a doctor who would be willing to devote the time and effort that would be needed, when it was not their idea.  Driving home I went from the top of the mountain to the bottom of the valley.  When I got home there was a message on the answering machine and when I listened, it was from a Dr. Bob Cooper who at the time was the Director of the Cancer Center at the University of Rochester, who had been at the Academy for Medicine for a different reason but when he saw all the people for our meeting had popped in to see what was going on.  He asked me if we had a doctor and I told him we did not.  A few days later he invited me to a meeting in his office and introduced me to Dr. Klemperer.  I had not met Dr. Klemperer previously, because at that time Teddi had not yet started chemotherapy.  We talked for over an hour and he agreed to serve as our doctor.

From that point on, Dr. Klemperer and his wife, Helen would come to Camp Good Days every summer to oversee the medical needs of our campers.  Even when he left the University of Rochester Medical Center to go to Marshall University in Huntington, West Virginia and then to All Children’s Hospital in St. Petersburg, Florida, where he was the head of the Bone Marrow Transplant Unit, he always maintained his New York Medical License specifically so that they could volunteer at Camp Good Days each summer.

Dr. Klemperer was not only an excellent physician, well respected by his peers, but he was an even better human being.  His courage and devotion to children dealing with cancer was evident when he agreed to be our doctor and take on the enormous responsibility of caring for all of our campers, given the fact that they came from various cancer treatment centers from all over the world, after we started our Doing a World of Good Program in the early nineties.  I never once had to worry about the medical needs of our campers.  We made a great team.

Dr. Klemperer could focus on meeting the medical needs of the campers and I could focus on raising the much needed funds, recruiting the volunteers, and planning the programs.  Once we saw that the camp was successful we expanded to provide programs for children who had a sibling or parent dealing with cancer, or had lost a sibling or parent to cancer.  Many of the programs and services started at Camp Good Days have been used as models for other cancer treatment centers and organizations all over the world.  Dr. Klemperer was a true pioneer and dedicated to improving the psycho-social needs and quality of life for children with cancer and their families.  Through all of his years with Camp Good Days he dedicated thousands of hours and he never got a dime or looked for any recognition.  He loved Camp Good Days and the children we served and wanted to be a part of making it a reality for as many children as possible to attend Camp Good Days.

After serving as one of our camp doctors for over 25 years, Dr. Klemperer retired.  The last time we personally saw each other was when I was in St. Petersburg for one of our annual Florida Fun Fest trips.  We talked for a few hours and when he was leaving he gave me the biggest, hardest hug, and when he drove away I thought he had maybe done that because it might be the last time we saw each other.  

I loved Dr. Klemperer and his passing away is like losing a piece of myself and certainly a large piece of Camp Good Days.  All that Camp Good Days has accomplished over the years, serving more than 46,200 campers from 22 states and 31 foreign countries, numbers that we will soon add to as we have just kicked off our 37th summer, would never have been possible without Dr. Klemperer. The Good Lord put Dr. Klemperer in my path and because of that and because of him, Camp Good Days became a reality and is what it is today

Monday, April 18, 2016

Cancer and the Candidates


Another election season is upon us and all of the candidates are talking about issues - some serious and some not at all - but none of them has talked about cancer and the toll this horrible disease is taking on our country, and our world.

Cancer is not a Republican, Democrat, Independent, Conservative, Liberal, or Tea Party issue – it is a people issue.  Cancer touches all of us.  11,000 Americans die each week from cancer. That’s unacceptable. What’s worse is that these people do not live in a vacuum. They’re our mothers, fathers, brothers, sisters, and friends, or in my case, my child, Teddi.  It is as if one of the Twin Towers is falling every single day, seven days a week, 365 days a year. 

It is pretty hard to understand how we, as a country, have given a blank check to protecting the homeland – to the tune of some 2-3 Trillion Dollars – but if you asked someone if they were more afraid of being attacked by a terrorist or going to the doctor and walking out with a diagnosis of cancer, I would venture to say that cancer is the bigger fear.  And it is no surprise that people are in fear of cancer.  If you are a woman, you have a one in three chance of being diagnosed with cancer, and if you’re a man, the chances are one in two, in your lifetime.  Those are NOT very great odds.

We have the means and the technology to be successful in this endeavor, but we all need to come together to make it happen.  Here at Camp Good Days, we continue to collect signatures on our Cancer Mission 2020 Petition, which supports clinical trials, as clinical trials are where the answers are going to come from.  If you have not visited our Cancer Mission 2020 website, www.cancermission2020.org, I encourage you to do so, and to sign our petition, and then share it with your family, friends, colleagues, and co-workers.  Join us in letting our current and future leaders know that we want finding the answers to cancer put on the front burner.
What greater gift could a President give those of us here in the United States, and people around the globe, than the legacy of having made finding the answers to cancer a priority and successfully completing that mission?

Wednesday, March 9, 2016

March is Colorectal Cancer Awareness Month


March is colorectal cancer awareness month and as we begin this month, it is a perfect time to remind everyone that cancer is the leading cause of death in Monroe County and colorectal cancer is the second leading cancer killer in Monroe County. 

Colorectal cancer is the fourth most common type of cancer diagnosis, but it is the second leading cause of death due to cancer (behind lung cancer). On average each year, 370 Monroe County residents are diagnosed with colorectal cancer and about 140 die from it. 

Deaths from colorectal cancer can be prevented through screening.  When colorectal cancer is diagnosed early, at the localized stage, the five-year survival rate is 90%. In some cases colorectal cancer can be prevented when precancerous polyps are removed during colonoscopies.  There are several different screening tests that can be used to find polyps or colorectal cancer. Each one can be used alone; sometimes they are used in combination. People should talk with their doctor about which test(s) is right for them and how often they should be tested. For those of average risk, screening tests usually begin at age 50.  Screening tests that can detect cancer and polyps include a colonoscopy and the less invasive, FIT Test, which may indicate cancer.

It is so important to the war on cancer that we all do our part to help reduce the number of deaths caused by cancer.  This is an exciting year for those of us who want to put cancer on the front burner.  In his recent State of the Union Address, President Obama talked about “Moonshot” and the effort to try and find the answers to cancer.  He stated, “For the loved ones we’ve all lost, for the families that we can still save, let’s make America the country that cures cancer once and for all. What do you think? Let’s make it happen.”  And he shared that he has tasked Vice President Biden with leading this mission. 

All of us, need to be aware that cancer is one of the leading causes of death and we can all help, in one way or another, to change this.  We at Camp Good Days and through the efforts of Cancer Mission 2020, urge people to wear blue this month, in recognition of colorectal cancer awareness month, but to also focus on preventative measures such as physical activity, healthy eating habits, taking advantage of the various screening tests available, and talking to your physician about preventative actions. 

Here at Camp Good Days, we continue to collect signatures on our Cancer Mission 2020 Petition, which supports clinical trials, as clinical trials are where the answers are going to come from.  If you have not visited our Cancer Mission 2020 website, www.cancermission2020.org, I encourage you to do so, and to sign our petition, and then share it with your family, friends, colleagues, and co-workers.  Join us, and join Vice President Biden, to let everyone know that we want finding the answers to cancer put on the front burner, so that we can all, as Americans, be rid of the fear of cancer and truly enjoy good days and special times!

 

Monday, February 8, 2016

34th Annual Teddi Dance for Love


The 34th Annual Teddi Dance for Love, which took place at St. John Fisher College on Friday and Saturday, January 29th & 30th, generated more than $54,000.00 to benefit the children and families at Camp Good Days and Special Times.  It is amazing to think that this event has been going on for 34 years and has become such a long-standing tradition and important part of the St. John Fisher College campus, culture and community. 

This year’s Teddi Dance for Love had a lot of “firsts”, some good and some sad.  This was the first year that Dr. Gerard Rooney was there in the role of President of the college.  He, along with his wife, Susan, helped to carry on the tradition on behalf of the administrative team and we were so happy to have had them in attendance.  On the sad side, this is the first year we were without the beloved Father Joe, who passed away in July 2015.  Each year, Father Joe would be at the Teddi Dance for Love, but his most important role, and one of everyone’s favorite parts of the event, is that he would bless all of the dancers’ feet, prior to the dance beginning.  We certainly felt his absence this year, but we know that he was blessing all of those feet from heaven and smiling down, happy to know the dance was going on.

Our kudos go out to this year’s Teddi Dance for Love Chair, Bri Macaluso, who along with her Co-Chair, Hilary Wilcox, and the entire student committee, who all worked so hard and dedicated so much time, in addition to their studies and extracurricular activities, to make this year’s Teddi Dance for Love a resounding success.  In addition, we would like to thank Jennifer Johnson, of 13WHAM TV for serving as this year’s Honorary Chair, and to all those, from the dancers, administration, faculty, staff, and volunteers, who all gave so much of themselves, to benefit the many children and families we serve.

This year we had many, many St. John Fisher College Alumni who came back to participate in the event, one that meant so much to them when they were students.  And, a large group of our campers had the opportunity to attend on Saturday and meet the dancers and they all had a great time together. 

All of the proceeds from the Teddi Dance for Love benefit the children and families at Camp Good Days and specifically go towards helping to make the Annual Florida Trip possible.  This year's Florida Trip is planned for April 21st through 27th and the campers will have the chance to visit Universal Studios/Islands of Adventure, Disney's Epcot Center, LegoLand, and St. Pete Beach.

The Annual Teddi Dance for Love is one of my most favorite events held each year.  The Teddi Dance for Love is a place where the students, along with some of the faculty, staff and administration, come together to celebrate life to the fullest, with some of the campers from Camp Good Days who have learned to appreciate each and every day and the gifts that many of us, so often, take for granted.  As Teddi’s Dad, they also give me something that words can’t describe.  As Dr. Lou Buttino, who started the Teddi Dance for Love when he was a Professor at St. John Fisher, said in his very special book, Camp Good Days and Special Times: The Legacy of Teddi Mervis, ‘Immortality is being loved by anonymous people.’  During the Teddi Dance for Love, Teddi’s spirit is alive and I know that she has touched the lives of all those students, faculty, staff, administrators, volunteers, and campers, who in some way or another have been a part of this special event over the past 34 years.”

 

Friday, January 29, 2016

Scott Norwood & The Teddi Dance for Love


It is hard to believe that it was 25 years ago that the Buffalo Bills played in one of the closest games in Super Bowl history and Scott Norwood missed the kick, far right.  It is also hard to believe that many people don't know more about Scott and the fact that he was not only a good kicker, with a great NFL career, but he is a fantastic person and someone who has always loved and supported the children we serve at Camp Good Days and Special Times. 

When he was with the Bills, Scott started the Kicking for Kids program in which donations were made for every successful field goal, to benefit Camp Good Days.  That program was carried on by Steve Christie, who had never even met Scott, but had great respect for him, and still goes on today.  Scott has taken the time to visit the Camp Good Days' Recreational Facility to personally spend time with the campers and volunteers, and one year, during our Doing A World Of Good Program, for children with cancer from countries around the world, he helped to make it possible for them to attend a Bills' game, helping to create a once-in-a-lifetime experience for many of them.  Scott also has taken the time of his schedule to attend the Camp Good Days' Tournament of Love Golf Tournament many, many times over the years. 

One of the most memorable visits that Scott made though, was to attend the Teddi Dance for Love at St. John Fisher College.  The 34th Annual Teddi Dance for Love is taking place tonight, starting at 8PM through tomorrow night at 8PM, at St. John Fisher College, and it was 25 years ago, shortly after that fateful Super Bowl, that Scott went above and beyond.  The students that year, given all the excitement about the Bills, wanted to have someone from the team attend the Dance for Love and speak to the dancers.  I asked Scott if he would be willing to come and to his credit, he said yes, and he came to Rochester that weekend and attended the event, and spoke to the dancers and volunteers about how much their efforts, support and generosity, meant to the children of Camp Good Days.  There are not many people, being in the situation and spotlight that he was in at that time, who would have agreed to that request. 

Following that Super Bowl, Scott never backed away from what had happened and in fact, answered all of the reporters' questions that night; and you will never find a teammate of Scott's who will point their finger at him or have anything negative to say about him.  Scott was a good kicker, but more importantly, he is a great person, a great husband and father, and a true first-class human being.  He is someone that I am pleased to consider a friend and someone I am forever grateful to for his generous support of the children and families we serve.