Keeping our children safe seems to be a natural thought. We take safety measures every day to protect our children. This includes things like bike helmets, sport protective gear, life jackets, seat belts, smoke free homes, and providing safe environments.
As a mother of a child with a melanoma diagnosis, it has become my mission to remind others about sun safety. Graham was diagnosed with melanoma at the age of 9. He could not even pronounce it. He called called it, “lemonola.” Graham’s melanoma was not sun related, but as I learn more, I have a hard time watching parents neglect some very simple safety measures to minimize the risk of skin cancer.
Graham also feels strongly about sun safety education and melanoma awareness. Graham recently was featured in an article that highlighted the importance of sun safety in teens. Graham wanted to share that boys need to be safe too.
Research is also important, Since Graham’s diagnosis, he has raised over $100,000. This past year he has decided to partner with the Melanoma Research Foundation and hopefully raise enough money to sponsor a pediatric melanoma grant.
No fundraiser is too small, every dollar raised is important. Graham spent some time talking to his congressional leaders about increasing NIH funding. He always says, “If a kid can raise $100,000, imagine what you can do.” As powerful as that is, he has classmates and strangers making and selling bracelets for $1.00. He tells his peers, “Imagine if this is the dollar that funds the hour of research that finds a cure.”
Cheryl and Graham are the founders of Graham's Gift. Graham raises money and awareness by making and selling rubber band bracelets. Each bracelet is $1.00 and has a yellow bead that represents Childhood Cancer Awareness. It is Graham's hope that no child will ever have to go through what he has gone through, and that he will raise enough awareness and funds to make a difference!
A layperson’s explanation of biomarkers and targeted immunotherapy
Although people share many biological similarities, each person is a unique biological environment of its own. The melanoma animal grows and defends itself based on the environment in which it has taken residence. This is one of the reasons it has been so difficult to find a standard treatment for this disease. Treatments create similar side effects in all individuals but may not have the same effect on the melanoma.
One of the most promising breakthroughs in melanoma treatment in recent years is the area of immunotherapy. There is presently a small but growing assortment of immunotherapy drugs available for melanoma treatment. These have two modes of operation. Interleukin, IL2, which has been available for decades, places the body’s immune system into high gear to attack the cancer. A more recent class of drugs, the “–umab” family (ipilumimab, nivolumab, etc.), removes one of the checkpoint systems the body uses to limit the immune system’s activity in order to protect itself from damage. These are the present weapons in the arsenal and the key is to determine which will be the best for each individual. This is where biomarkers come into play.
According to the National Cancer Institute a biomarker is "a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition." Look at it as hunters seeking to kill some prey and using evidence from biomarkers to determine what the prey is. First determine the environment, say the Serengeti. Then examine the tracks and scat of the prey to determine the exact animal, in this case a lion. Next bring together what you know; this will give you the safest and best chance of success. You choose your people and weapons and set out to eliminate the threat as quickly as possible. Your approach will depend on whether you find you are facing a tiger in the jungle or a bear in a forest. To further complicate the issue, melanoma can be an infinite number of hybrids of these environments and animals, which will mean the therapies must also be used in the correct combination with each other and with targeted therapies such as BRAF and MEK inhibitors that attack specific genetic mutations in some melanoma tumors.
All this is even more important because melanoma is adaptable. That is, if not eliminated on the first run it can adapt and protect itself, much like how infections will lose vulnerability to antibiotics but on an accelerated timeline. This underscores the importance of coming up with the correct therapy and dosage for the individual patient so that a maximum dose of the most effective treatment can be delivered the first time. As always, early diagnosis and speed of therapy is key because the less time the melanoma has to grow and prepare its defense, the better chance there is of success.
Sol Survivors Oregon
SolSurvivors Oregon is a local network of patients, supporters, and advocates who educate our community, advocate for sun safety, and are working to improve outcomes with early detection.
Everyone’s life is marked by defining moments. A marriage, the birth of a child, or a job promotion would mark a happy or joyous defining moment. An illness or the loss of a job would mark a sad or unhappy defining moment. I would consider a stage four melanoma diagnosis a tragic defining moment.
Some people are fortunate and their lives are free of any tragic moments. For the Spiegler family our tragic moment came on February 8, 2008. That is the day when Peggy woke up and said to me, “I don’t feel horrible but something is not right.” Two weeks later we were in the doctor’s office at the Abramson Cancer Center at the University of Pennsylvania and learned that Peggy had a stage four melanoma.
Peggy’s bravery in the face of such a dire diagnosis was typical of so many other patients that I have since come into contact with. I do not know where they get their strength. Her gallant fight to beat melanoma lasted only a few months. When she was diagnosed in 2008 there was not much in the arsenal of drugs to help her survive. I once read someone describe how a small platoon of soldiers were all killed by an overwhelming force. The writer said they were not defeated, they were overwhelmed. That is how I will always remember Peggy’s struggle.
After we lost Peggy our family decided that we wanted to do something to honor her name and help prevent other families from going through the same nightmare that we did. We had no definite plan in place but we reached out to our family and friends to help organize our first fundraising event. We have been raising funds ever since then.
In November of 2014 The Peggy Spiegler Melanoma Research Foundation met with six other foundations in Cherry Hill, New Jersey. The intent was to bring small grassroots foundations together to share resources, make our voice louder, and support each other.
As I sat at the table and listened to people tell their stories of how they had lost family members, I was amazed at the strength of these people. They were not going to let melanoma define them. They were going to fight back. I was energized by their strength. I sat there and revealed my innermost feelings to people that I had never met in my life, feelings that I had not shared with my family. I knew that it was safe to do this and that everyone there would know exactly how I felt.
The group of seven original members has grown to over 20 members and I am so proud to be a part of what that group, the Melanoma Action Coalition, has accomplished in two short years. MAC has also helped to redefine the mission of the Peggy Spiegler Melanoma Research Foundation. We are spending more and more time on education and prevention. Our free skin screenings and awareness programs are a big part of what we are doing now to help save lives.
Yes, our family and friends are permanently scarred by the Feb. 8th diagnosis, but we are out there fighting hard so that other families do not have to be defined by that same diagnosis.
Neil heads the Peggy Spiegler Melanoma Research Foundation and is president of the Melanoma Action Coalition
My name is Tracy Callahan and I am the Founder and CEO of the Polka Dot Mama Melanoma Foundation established in 2015. I was first diagnosed with early stage melanoma at the age of 38, and by age 40, I had been diagnosed two more times. I am the Mom of two amazing boys ages 8 and 11 and they nicknamed me the “Polka Dot Mama” because of my many moles. I consider myself fortunate that my melanomas were caught early. I know that this is not the case for many.
After my third diagnosis I decided to start blogging. I knew that I wanted to use my voice to raise awareness for this often unspoken about cancer. Soon after starting my blog I began planning a Gala. I knew that I wanted it to not only benefit melanoma research, but I also wanted to stay committed to keeping it locally sourced. In addition to being a melanoma advocate, I am also a foodie! On May 1, 2016, we hosted our first annual “Taste For a Cure: Chef’s Gala Benefiting Melanoma Research.” This unique farm-to-table gala allowed us to raise $40,000 that was donated to the Melanoma Research Alliance, our charitable ally. We have been overwhelmed with the support of our local community.
In addition to raising money for research through our community efforts we have also raised over $30,000 this year for education and awareness efforts. We have been able to raise awareness both through social media and at a local level. We attend sporting events, run clubs and local events handing out free sunscreen and promoting sun healthy habits and early detection of melanoma. We also provide education to school age children all the way up to adults. Our vision is to reduce the incidence of melanoma by raising awareness, encourage prevention and improving early detection, rapid diagnosis and effective treatment of melanoma.
This fall we have several events planned including a Chili Cook Off to fund the installation of sunscreen dispensers at nine local firehouses, a virtual 5K Polka Dot Run that anyone in the world can participate in and a Martinis for Melanoma. We are also in full swing organizing our second annual Taste for a Cure that is already half sold out!
We are honored to be collaborating with the Melanoma Action Coalition and hope that together we can have a larger impact.
Announcing MAC's new blog.! Over the coming months, we plan to feature both personal reflections and informative articles submitted by our members. In our first post, one of our members recalls her first MAC meeting and all that has happened since..
My daughter Rebecca was not a big fan of groups. Although she did meet and share experiences with others in waiting rooms and hospitals throughout the course of the clinical trials in which she participated, she did not seek out support groups or online communities during the seven years she lived with melanoma. We who were caring for her followed her lead. We were like travelers doing our best to navigate strange and treacherous territory without the benefit of the experience of anyone who had gone before.
After we lost Rebecca and decided to establish a foundation in her memory, we continued to go it alone. We stumbled through everything from incorporating and applying for 501(c)(3) status to planning our first fundraisers and deciding how to spend the money we raised, without ever thinking that we might benefit from talking to others who had done this all before. After about two years of our Lone Ranger existence, it occurred to me that it might be useful to find and connect to other melanoma organizations. I contacted the Melanoma Research Alliance and had the good fortune to speak with Jennifer Engel, who was then MRA's Development Manager for Foundations. She promptly added our foundation to MRA's mailing list and gave me names of a few other foundations working in my local area. I was happy to have this bit of connection but did not reach out any further after that, continuing to steer my foundation along its lonely path.
A few months later, I brought in the mail and found an interesting letter. It was from Neil Spiegler, who ran the Peggy Spiegler Melanoma Research Foundation in New Jersey, and it invited members of foundations throughout the mid-Atlantic region to attend a meeting in Cherry Hill, NJ that fall. I was excited beyond belief at the invitation. I would actually get to meet some other people doing what I was trying to do, share ideas, maybe get some advice. I promptly accepted the invitation and eagerly awaited the meeting date.
On November 1, 2014, I drove the two hours from Baltimore to Cherry Hill through pouring rain. When I arrived I couldn't find the address I was given. After driving in circles quite a few times, I finally located the meeting place and ran from the parking lot through sheets of rain to arrive soaked and disheveled just as the meeting was about to begin. The greeting I received was as warm and welcoming as the outside was cold and nasty. There were 10 of us, representing seven organizations, gathered around the table. We introduced ourselves informally before we began and then told our stories more fully as we sat down together. The stories we told were not just about fundraisers and awareness activities but about why we were doing what we were doing. They were stories of those we had lost and stories of those who were still fighting this disease—and as I told Rebecca's story, I felt that for the first time in many years I was talking to people who got it, who understood, just as I understood their stories,
We talked together, cried together, worked and planned together that day, and left knowing that we had already formed strong bonds. In subsequent months, we began the work of building a formal coalition. We are now 20 organizations strong and growing. Our membership reaches from coast to coast. We share ideas and resources, turn to each other for advice, support one another, and bring our voices together to advocate for such public policy initiatives as restrictions on the use of tanning beds. But at the heart of what connects us is still a shared commitment to defeating melanoma rooted in deep personal experience.
In February, we held our first annual meeting in Washington, DC. Many of us gathered for dinner afterwards. As drinks were served, one of our members asked for our attention. Raising his glass, he made a toast “to all those who aren’t with us tonight.” No other words were necessary. Raising our glasses, we looked around the table, meeting the eyes of those who knew our stories, those who understood our pain, and those who shared our determination to work together toward the day when no one has to sit round a table remembering a loved one lost to this dreadful disease.
Christine is president of The White Aisle Foundation and a MAC Steering committee member.