Monday, June 26, 2017

Thinking of How it all Started...


Who would believe that what started 38 years ago to give the youngest of my three children, Teddi, who was nine at the time, and 62 other children, a residential camping experience, would turn into what Camp Good Days is today. 

Following Teddi’s diagnosis, it became evident that the toughest part of her battle with cancer, was not the craniotomy, radiation therapy, or chemotherapy; it was the loneliness of being the only child in her school and neighborhood dealing with cancer.  This was robbing her of that very special time in her life called childhood, where children have that sense of invincibility; they think that they will live forever and that there is nothing they can’t do.  As Teddi’s father, she looked to me to navigate through her cancer journey.  I remember being with Teddi in her bedroom where she would look up at me, thinking that I could provide the answers that she wanted, only for me to go into the bathroom, grab a stack of towels and break down and cry because I couldn’t help her, and I couldn’t help her to understand what was happening, because I myself didn’t understand. 

During the winter season, I was watching the Today Show one morning, Tom Brokaw was the host at the time, and they said they would take a sort break, and when they came back, they were going to take the viewers to see a special place.  To this day, I don’t know why I decided to watch through the commercial.  In the segment, they showed children who were dealing with cancer at a camping facility.  They were smiling and laughing and singing songs around a camp fire, and fishing in a pond.  I thought of what I saw all during my drive to Albany and how I wanted Teddi to have that experience.  When I was in Albany, I shared what I saw with a young lady in the office, Kathleen, who would put famous TV detective, Columbus, to shame.  She contacted the Today Show, and they agreed to send a copy of the show segment to me.  She then tracked down the reporter and asked him to call me, which to his credit, he did.  I talked to him for 45 minutes and there was excitement in his voice about what he had seen and what I wanted to do.  I was also able to get in touch with the doctor who was in charge of the program and learn more about his.  Rather than send Teddi to the program that was far away, I began to talk to two friends of mine about starting my own program, and I convinced the doctor to come to Rochester to talk about the process. 

So, on a cold morning in Rochester, at the Academy of Medicine, Camp Good Days was born.  There was no name, no money, and no volunteers, but we definitely had the kids.  I was able to find a doctor who was willing to be the medical director, and for the next eight months, I worked on putting the first program together.  We were able to have the first camp at Camp Eagle Cove in the Adirondack Mountains on Fourth Lake.  There were 63 children who participated that first year: 21 from Rochester, 21 from Syracuse, and 21 from Buffalo, along with 77 volunteers.  Everyone who was there that first summer has very special memories in their hearts from their time there.  Soon after the children were on the bus to go home, we were already talking and planning about how to make next year bigger and better, and the rest is history. 

Over the years, Camp Good Days has had great growth.  I am proud to say that we were the first organization in the country to start providing programs to meet the specific needs of children with a sibling or parent with cancer, and later we established a program for men and women with cancer.  When I started Camp Good Days, I made two promises to myself, and I have done my best to make them a reality.  One was that Camp Good Days would never be a bureaucracy, because my career was with the state government, and that was probably the second largest bureaucracy in the world, and the second was that no family would have to deal with the financial anxiety of sending their child to camp when they were already worrying about the question, “why did my child get diagnosed with cancer?”  I never wanted camp to be a source of financial stress for a family already dealing with so much, and so I said that all of our programs and services would be provided free of charge to the participants, and I am pleased that all of the programs and services have been free for the last 38 years.  This is only made possible because of generous individuals and special events like our Camp Good Days Wine Competition and Auction Dinner.  It is crazy to think that 38 years have gone by.  Over the past 38 years, we have served over 47,000 campers from 22 states and 34 countries, and we will add to these numbers after this summer.  Many of our programs and services have served as models for other cancer programs and organizations all over the world.  As today is Teddi’s birthday, I keep thinking of everything that we have accomplished over the years and I am so thankful for everyone who helped to make this happen. 

One day while visiting at the cemetery where Teddi is buried, I thought that I would like to do something for Teddi’s grave, and so with the help of some of the staff in my office, and the cooperation of the cemetery, we made a beautiful plaque for Teddi’s headstone.  A few days ago, some of us visited the grave to see what it looked like, and it looks beautiful.  Over the years, whenever I have had a difficult decision to make, I would find myself going to where she is buried; it is a very quiet place, and I can talk to Teddi there.  It is so amazing to realize that one girl’s battle means so much to so many children and families from all over the world.  I would like to leave you with the idea that children are not possessions, they are a gift from God, and we should always make sure to tell those that we love how much they mean to us.  God bless you all, and have a safe and happy summer.        

Monday, May 15, 2017

Project Exile Continues to Work for Rochester




Over the past several months following the election of President Donald Trump and the appointment of Attorney General Jeff Sessions, Project Exile has received a lot of attention.  Specifically, the Administration has recognized that Project Exile, which relies upon coordinated strategies that bring together all levels of law enforcement to reduce gun crime and make our cities safer, ought to serve as a model for combatting violent crime in cities across America. We, in the Rochester community have the longest running and one of the most successful Project Exiles in the country, and we should be very proud of all that has been accomplished. 

During the holiday season of 1997, three uniformed Rochester Police Officers had been shot.  Fortunately, none died, but in order for local law enforcement to find how that perpetrator got the gun that he had used into Rochester, they needed the help of the federal Bureau of Alcohol Tobacco and Firearms (ATF).  This need resulted in the RPD and the ATF forming a multi-agency gun task force, so that they could begin to develop cooperation and share information.  At that time, the Rochester community was desperately searching for a new way to address the crime and violence that was plaguing our community.  Indeed, at that time, the homicide rate in Rochester was hovering around 70 homicides a year, which gave us the distinction of having the highest per capita homicide rate of any city in New York State. 

In trying to find what our community could do to help to deal with the proliferation of illegal guns in our community and the homicide issue, Rochester’s Mayor at the time, together with the RPD Police Chief and the Monroe County District Attorney, met with then-FBI Director Louis Freeh, during a visit that Freeh was making to Buffalo to speak to the employees at the Department of Justice.  Director Freeh mentioned a new program called Project Exile, that was started in Richmond, Virginia, that was having very positive results. 

The Project Exile model relies upon cooperation between different state and local law enforcement agencies, and their federal counterparts.  Fortunately, such cooperation already existed in Rochester in the form of a multi-agency gun task force.  What the model also required, however, was significant cooperation between prosecutors at the local and state level in order to ensure that offenders were pursued by whichever prosecutor’s office could do so most effectively.  Historically, this had been a difficult undertaking as prosecutors at the local and state level are elected, while federal prosecutors are appointed. Fortunately for the Rochester community, our then-Acting District Attorney, Howard Relin, and our then-United States Attorney, Denise O’Donnell, were willing to put their egos aside, and work together for what was best for our community.  As a result, a decision was made to give Project Exile a try in Rochester. 

Despite the interest and commitment that law enforcement had for Project Exile, one necessary ingredient was still missing.  In order for Project Exile to succeed, community involvement and support was also required.  At the time, one of the federal judges in Rochester invited me to come to a meeting in his chambers to see whether I, and the PAVE (Partners Against Violence) Initiative of which I was a part, would be willing to lend our support and assistance in bringing Project Exile to Rochester.  So, on September 28th, 1998, at a press conference at our Federal Building in Downtown Rochester, we announced that we would be the second city in the country to implement Project Exile. 

In the first year of its implementation, the homicide rate in Rochester went down to a 14-year low.  According to statistics from the ATF and the RPD, over the past 18 years, hundreds of criminals have been exiled and thousands of illegal guns have been removed from the streets of our community, and the homicide rate, while it has fluctuated over the years, has never gone back to what it was before we began Project Exile.  It is impossible to know what devastation those guns could have caused in our community if they, along with the criminals who possessed them, were allowed to remain on the streets.

Out of Project Exile grew Project TIPS, which stands for Trust, Information, Programs & Services.  TIPS is a program where we bring different law enforcement agencies and social service agencies to a community selected by the RPD Chief and his command staff.  The communities selected typically have a higher than normal amount of unsolved crime.  The goal simply is to raise the level of trust between the people who live in those areas and the men and women of law enforcement who are charged with their public safety.  Working with volunteers from the Criminal Justice Program at the Rochester Institute of Technology, a group of people spend the first part of TIPS going door-to-door asking people simple quality of life questions so that people in the community can share their concerns and frustrations about the quality of life in that particular neighborhood.  The meetings also provide the residents a vehicle through which they can anonymously share information about criminal activity in their neighborhood.  They are able to do so without fear of reprisal as the authorities announce that we are visiting every single home in their neighborhood speaking with every resident possible.

After being surveyed, residents are invited to an area which has previously been established as a staging area for various law enforcement agencies, the fire department, and various social service agencies.  A neighborhood cookout is also held with everyone being invited and all food donated by TOPS Supermarket.  TIPS further provides a way for children in the community to interact with representatives from law enforcement and the fire department in a collegial and non-threatening environment.  The TIPS Program, which we have conducted every summer for the last eleven years, has proven to be very popular and extremely successful. 

Another program that grew from Project Exile is The Rochester Youth Violence Partnership (RYVP), which is a hospital-based violence intervention program that targets trauma victims under the age of 18 when they present for medical care following a knife or gun injury.  This was started by Dr. Gestring and the University of Rochester Medical Center.

Project Exile is a model for law enforcement cooperation around the country, and I am proud to have served as the Chair of the Project Exile Advisory Board since its implementation.  I am even more proud that every month for nearly two decades, members of law enforcement, government and social service agencies, clergy, and non-government organizations—those who comprise the Project Exile Board—have gathered at the Federal Building for a single, unifying purpose.  That purpose is to find new and innovative ways to keep our community safe and a good place to work and raise a family. I am happy to report that nearly twenty years since its start, Project Exile continues to work for Rochester.

Tuesday, February 21, 2017

The Passing of a Close Friend


I hope that all is well with you.  I will take credit for the nicer than usual weather we have been having, which Wendy and I brought back with us from Florida.  

A week ago, on Sunday, I received a call from the son of one of my best friends, Skip DeBiase, telling me that Skip had passed away.  Skip’s son asked if I would be willing to read the eulogy, which I was honored to do, but it was one of the hardest things I have ever had to do since Skip and I had been friends for over 40 years.   

Skip had struggled with back problems and surgeries, which caused bouts of depression, and then he got the worst news anyone could get; that he has a malignant tumor.  He was told that he should start chemotherapy and radiation, but Skip chose not to.  Like everything else in Skip’s life, he chose to leave this world on his own terms.

Over the summer, I was at camp while Skip was staying at home and didn’t want to see anyone.  I wrote him a letter expressing my love of our friendship, which I have pictured below for you all to see.  I hope that this letter will show you how close our friendship was, and how much I truly cared and loved him.


Wednesday, January 18, 2017

Cancer Takes Another Before Their Time

Cancer, as we have said many times, affects everyone; either directly or indirectly, and Camp Good Days is no exception.  Once again, on Martin Luther King Day, I had to hear some very sad news.  I received a call early in the morning telling me that our long-time volunteer, Matt O’Brien had passed away and had lost his battle with cancer.  Matt exemplified what it meant to be a Camp Good Days volunteer.

I first met Matt when he volunteered to be a camp counselor at our summer camp back in 1992.  He has been volunteering at camp in the summer pretty much every year except for last year.  He always volunteered at more than one program, which I am sure took up much of his vacation time.  He would volunteer at our women’s oncology weekends, our Teddi’s Team program for 8-12 year olds with cancer, and our Doing a World of Good International program.  He loved the campers, and you never questioned why he was there; he gave all that he had to the campers he worked with.  He was always willing to do anything for anyone and he never complained.  When I would go to thank him, he would always say, “I should be the one thanking you for this experience.”  He helped with our special events like our Annual Joe Benet Memorial Kazoo Fest, the Explorer Post, and the air show. 
Matt at Camp
I, along with countless others here at Camp Good Days will miss him.  I not only consider him to be a great volunteer, but also a great friend.  I know that he will be reunited with all of his Camp Good Days friends in Heaven, and I feel that Sonia is greeting him at the door.  

Each year, Camp Good Days has A Night of Gratitude, where we recognize volunteers and supporters of Camp Good Days who have gone above and beyond what we as an organization can expect, and I am very pleased to say that at this year’s Night of Gratitude, on April 7th, we will be inducting Matt into the Ring of Honor.  In this way, he will be a part of Camp Good Days for all staff, volunteers, and campers to see in the future.  He was a good man, and he will be greatly missed.

Tuesday, January 10, 2017

A New Year Brings Promise


Welcome to 2017, with all of the promise that a new year has to offer.   All of us from Camp Good Days and Special Times are excited to see what this year will bring.  Hopefully, we have laid the groundwork, and there will be some movement with Cancer Mission 2020 this year.  I hope that we will take a big step towards reaching the goal of making cancer the type of disease that when someone is diagnosed, they can continue to live a good quality of life and hopefully die from something other than their cancer.  There is a lot of good work being done to help achieve that, but I am hoping that with the election of the new president, and with one party having the majority of the two houses, that maybe some of the bickering that has plagued our government over these past many years will end, and we can move forward towards getting something accomplished. 
To me, and I think to many of you, what could be more important than finding some of the answers to this disease that takes so many of our loved ones?  As we have said many times, cancer is not a Republican, Democrat, Conservative, or Liberal disease, it is an equal opportunity illness that unfortunately takes 11,000 of our fellow Americans every single week. When your chances of being diagnosed with cancer in your lifetime are greater than that of tripping while using your Smartphone, I think it is time that something concrete gets done.  Your chances of tripping while texting are 1-in-10, but in the United States today, your chances of being diagnosed with cancer in your lifetime as a woman is 1-in-3 and as a man it is 1-in-2. Those are certainly not odds that we should continue to live with. 
With your help, and with the help of the many 1,000s of people that have signed our Cancer Mission 2020 petitions, something can be done.  We need people who are not afraid to stand up and be counted. Urge your family, your friends, and your co-workers, to get involved and help us say that we want action.  I am pretty confident that we will begin to see some.  If you haven’t signed the Cancer Mission 2020 petition, please do so today, and I hope that you will join with us.  As we have said, Cancer Mission 2020 is like a tripod; the first leg of the tripod is education and sharing with people where we are with our efforts to cure cancer.  The second is a call to action, which we started with the call to increase the number of clinical trials and trying to secure additional funding for these trials, as those are where some of the answers to cancer are going to come from.  The last leg is accountability, which so often is sorely missing when it comes to cancer and cancer research. 
I am pleased that Vice President Biden has said in some of his final interviews as Vice President that he is going to commit his time and efforts to help lead the way to finding the answers to cancer.  And I know that Louise Slaughter and Tom Reed who have been very, very supportive will do what they can do to help as well.  I am also excited to hear about the work that Eric Trump, our President Elect’s son, has done.  He has been out there working to help secure funds for cancer.  I think that this is the time to come together, and maybe we can convince President Elect Trump to make one more cabinet level position; meaning for the lack of a better expression, a cancer tsar, someone whose sole job is to bring all of the efforts to finding the answers to cure cancer together, so that we can have a coordinated effort rather than the fragmented effort that we have today. 
I needed no greater reminder of the devastation of cancer than these past couple of weeks, when I learned that someone who was a very large part of Camp Good Days in its formative years, Sonia Basko had died. I first met Sonia when she was just becoming a teenager following her diagnosis of Hodgkin’s Disease.  Sonia was a regular at Camp Good Days with our summer camping programs, our Kris Connection, and our annual Florida trip.  While I haven’t really seen Sonia in a while, it was nice reading the notes about her and to hear some of her friends and co-workers speak at her funeral about what she has gone on to accomplish with her life’s work of education and support of social justice causes for teachers.  I am confident that when she gets to heaven, she will reunite with some of her friends from the early days at Camp Good Days, but I am nervous that she might start to unionize them.  I was happy to have the opportunity to talk to Sonia’s sister and mother at the funeral and was honored to listen to them express how much Camp Good Days meant to Sonia and her sister in different ways.  Her sister came to our sibling camping program and Sonia came to our programs for children with cancer.  Like many of our long term survivors, it wasn’t the cancer that directly took Sonia’s life; she contracted pneumonia as she began to treat her reoccurrence.  Sonia, like many of our former campers, had a weakened immune system.  Diseases that a healthy person’s body would be able to reject and fight vigorously are hard to fight for someone who had cancer and therefore a very weak immune system. One of the first things I did when I learned of Sonia’s passing was to look through my office to find a couple of pictures of Sonia, and what I found were pictures that were taken when we took the kids from our Kris Connection to meet President and Nancy Reagan in the Diplomatic Greeting Room in the White House.  I can’t help but wonder if that was the start of Sonia’s lobbying efforts.  I also found her questionnaire that she filled out when she signed up for Kris Connection when she was thirteen.  Sonia’s presence will be greatly missed here at Camp Good Days.

Participants of Kris Connection at the White House in the Diplomatic Greeting Room circa 1987
President and Nancy Reagan meeting the participants of Kris Connection circa 1987
To stay in touch with Camp Good Days, visit our website, www.campgooddays.org.  Also, visit our Cancer Mission 2020 website to stay up-to-date, and to sign our petition if you haven’t already done so, www.cancermission2020.org.  You can also listen to our radio show, Good Days and Special Times, the first Thursday of every month at 6:30 PM with WYSL on 1040 AM or 92.1 FM.  If you cannot tune in when the show is airing, you can listen to the show as a podcast on the WYSL website, www.wysl1040.com.   
I will try to do a better job of keeping these posts a little more up-to-date, and I ask you to bear with me.  I wish all of you a New Year that will be filled with good health, happiness, peace, and the most important ingredient, love. 

Wednesday, November 30, 2016

The Holiday Season and the End of 2016


As the year of 2016 is coming to a close, it is a good time to reflect back on this past year at Camp Good Days.  I am so thankful for the many blessings that have been bestowed on me and I do not forget the awesome responsibility of being the steward of Camp Good Days.  This organization keeps building on Teddi’s legacy as we try hard to keep making the organization better.  On October 1st, our 38th year of camp began. Sometimes, it seems like I went to bed and woke up, and time has flown by.  Other times, it seems that I could have lived five lifetimes and not have accomplished all that we did. 
Recently, I was honored to receive the Cure Magazine GBM Heroes Award in Scottsdale, Arizona.  It was a beautiful event and I was very pleased to have a lot of people that make camp possible join me.  The event was held at the Fairmont Scottsdale Princess Hotel.  I was able to meet some amazing people who go above and beyond to help those affected by glioblastoma.  I was also able to meet Fran Drescher, who is known for her acting role in “The Nanny” and for her work in helping those who have been touched by cancer.  While I was there, I was able to visit Arizona State University, Sedona, and the Church of the Holy Cross, which was built into the side of a mountain.  I was humbled by the amazing works of nature and all of the wonderful things in this world that the good Lord created.  Looking at what was around me, it brought into perspective how small and finite a person’s role is in the grand picture.  This trip to Arizona and receiving the award made me come back to Camp Good Days even more excited to make 2017 the best year yet.
Kazoo Fest is once again in season in Rochester and Buffalo thanks to the support of JC Penney’s.  Kazoo Fest will be happening at the Eastview, Marketplace, and Greece Ridge Malls in Rochester, and the Galleria Mall in Buffalo.  Kazoos make great stocking stuffers, and they are a very fun tradition for children and adults. All of the proceeds benefit the children and families of Camp Good Days, and we are still looking for volunteers for each of the malls, so if you would like to volunteer, please call the Camp Good Days office.  During Kazoo Fest, we will also be selling car raffle tickets.  Thanks to the generosity of Vanderstyne Toyota and Toyota Motorsports, we have a 2017 Corolla SE that could be yours! Tickets are being sold for $20, or three tickets for $50. The drawing for the car will happen on Wednesday, January 4th during the Camp Good Days Annual Open House.  Every penny goes towards the programs and services we provide. 
A very exciting and meaningful event is coming up, A Night to Remember.  During this event, we dedicate the night to six camper families who need some lifting up during the holiday season.  This event is a great way to get the holiday season started.  During the night, the guests are picked up by limos, there is food, reindeers, Santa, Mrs. Clause and an Elf, music, and presents.  For myself, the highlight of the night is when I get to read “Twas the Night Before Christmas” to everyone.  This event is such a great way to get in the holiday spirit and remind ourselves about the true meaning of Christmas. 
This is also a great time of year to stay up to date on everything Camp Good Days by tuning in to our radio show which airs the first Thursday of every month at 6:30PM on WYSL 1040AM or 92.1FM.  The radio show can also be found online on our website if you do not have the chance to listen to it when it airs. 
I am looking towards the new year with excitement.  Cancer Mission 2020 is moving in the right direction, and I am hoping that it keeps moving forward within the next year.  I am so very thankful for everything that I have been blessed with, and I am excited to see what the new year brings for everyone involved with Camp Good Days.  May you and your family have a wonderful holiday season and a new year filled with good health, peace, and much love. 

Wendy, Dr. Constine, and I with Fran Drescher
(Photo credit to Derrick Jones-Nelson)

Wendy and I in Sedona

Monday, October 3, 2016

Cancer and the Election

As Camp Good Days ends its 37th year of providing programs, I find myself thinking about where we have come as an organization, and about the progression of the medical industry in treating and diagnosing children and adults with cancer.   There have been improvements, but in order to keep moving forward, there needs to be support from our leaders.   It is frustrating that, during this time when we, as a country, are deciding on our next president, there have been a large number of debates where a whole host of issues have been talked about, but unfortunately cancer hasn’t been one of them.  There was talk about the Zika Virus, immigration, poverty, and terrorism, which are all important topics, but 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.  It should be one of the most important topics.  Either directly or indirectly, cancer touches all of us. 11,000 Americans die each week from cancer.  That’s unacceptable. 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. It is hard to understand how so many families that are touched by cancer seem to be so underrepresented.  These families have valiantly fought with this disease, their family members going through the most potent treatments medical science can come up with, and I don’t think our elected officials are fighting for them.

Our leaders need to let us know how they are going to find answers.  There is no question that we have the technology, scientists, and researchers to find information, but there is no coordinated effort.  We need money and leadership to help us find the way to win the war on cancer, and that leadership needs to come from Washington.  The President needs to appoint a Cabinet level position, whose job is to bring people together to coordinate efforts and information.  I was excited when President Obama started Cancer Moonshot, and selected Vice President Joe Biden to lead the program—the last time a president had done anything in a major way regarding cancer was President Nixon when he declared war on cancer in the 70’s.  Where we have made the most progress is in certain forms of pediatric cancer.  As recently as the 1960’s and 70’s, these cancers were almost always fatal.  Today, children diagnosed with these forms of cancer have an 80% chance of being long term survivors, and not in the traditional sense, where they could live five years from the date of diagnosis, or two years off of any kind of treatment, but can actually grow to be a ripe old age.  And while these children and families still have medical challenges, most of them appear to have successfully beaten their cancer.

Clinical trials are where the answers are going to come from, and we, as a country, need to increase the participation in trials.  We need money to support trials, and we need physicians to stay up to date on information from clinical trials so they can share the information with their patients.  65-70% of pediatric oncology patients in the United States are active in trials; however, the percentage of adults active in trials is 1-3 percent.  Hopefully, 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.  We need support for these trials from our leaders; we need them to put finding the cure to cancer on the forefront. 

We are blessed here, in upstate New York, to have Republican Congressman Tom Reed and Democratic Congresswoman Louise Slaughter advocating for Cancer Mission 2020.  They are committed to helping Cancer Mission 2020 be successful and committed to helping end the deadly reign of cancer.  Recently, Congressman Reed and Congresswoman Slaughter came to the office where we presented them with close to 40,000 signatures to give to Vice President Joe Biden, to show how much we are in support of finding the answers to end cancer.  If a Republican and a Democrat can come together to support the same mission, there is no reason others can’t stand up and support. 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. I urge my fellow citizens to make smart decisions when entering the polls this year; remember that our future president needs to be committed to finding a way to end cancer. We need to show our leaders our desperation and frustration before someone you love or care about is affected by cancer.  Let’s let our voices be heard, we can’t wait any longer. Everyone needs to stand up and be counted.