Guest Post from the Polka Dot Mama

This week, we’re featuring a guest post from Tracy Callahan, who founded and leads the Polka Dot Mama Melanoma Foundation

T CallahanMy 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 10 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.

As a former research nurse, I knew and understood the importance of supporting and funding research. 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 reached out to the Melanoma Research Alliance (MRA).  I knew right away that I wanted to align myself with them and work towards raising money for much needed melanoma research.

In March of 2015, 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 will host our first annual “Taste For a Cure: Chef’s Gala Benefiting Melanoma Research.” This unique farm-to-table gala will raise money to be donated to the MRA. We have been overwhelmed with the support of our local community. It has been incredible to see local chefs, businesses and sponsors donating their time, talent and services to help us raise as much money as possible.  As of February 4 (World Cancer Day) our event is officially SOLD OUT!

In addition to the Gala, the Polka Dot Mama Melanoma Foundation has been working with a local media company and has begun production on public service announcements as well as an awareness video that will debut at the Gala. We have been collaborating with multiple grass roots melanoma moundations across the country in hopes that together we can have a larger impact.

So many advancements have been made with the treatment options for melanoma in the last few years. It is my strong belief that we are on the cusp of not only finding more effective treatments, but also a cure.  The MRA is the largest private funder of melanoma research and I am truly honored to be a charitable ally of theirs.

A Daughter Reflects on Her Father’s Battle with Melanoma

By Samantha Stinchcomb

This week, we feature a guest post by Samantha Stinchcomb, a student at the University of Delaware. When her father succumbed to melanoma, Samantha and her family and friends founded the Wayne Stinchcomb Big Orange Foundation to raise money for melanoma research and to educate her local community about the disease and the importance of early detection.

Big Orange photo

Samantha with her dad, Wayne

At 13, while most girls were picking out a dress to wear to the 8th grade dance, I was busy picking out a quote for my dad’s tombstone. After 3 years full of long doctor appointments, harsh experimental treatments, extended hospital stays, little good news, lots of bad news, and hours of prayer, my father had lost his battle to melanoma.

It began in 2007 when my mom noticed a suspicious mole on my dad’s back. Starting with the initial dermatologist visit, my parents were always open and honest with my brother and me about what was happening. I can remember every single conversation we had after each doctor appointment or hospital visit. They tried to explain things as clearly as they could, but being only 13, I had a hard time understanding everything. In the beginning, it all seemed so simple: remove the mole and the cancer would be gone. I never expected we’d still be having those conversations three years later.

I specifically remember talking with my parents after they learned about immunotherapy. Considering I was struggling in my 8th grade science class, I didn’t really understand the concept. My mom tried to explain by comparing it to Pac-Man. She said the cells made in the lab would “eat away” at my dad’s tumors. It was our final option and, even though it was another experimental treatment, we had to have faith and pray it would work.

Initially, the treatment was going well. My once bed-ridden father, so weak he was only recognizable by his beaming smile, was becoming himself again. He was eating regularly, laughing a lot, and even leading my basketball team all the way to the championships as our coach. Christmas of 2009, my father had been declared three months No Evidence of Disease (NED) and my family couldn’t be happier.

However, just 10 short days later, our life got flipped upside down once more. My parents came home from a check-up completely silent. No one spoke but no one needed to; it was understood. The immunotherapy had been unsuccessful and the melanoma was beginning to attack other organs in my dad’s body. We were out of options and there was nothing else we could do. Three months later, at 12:37 am on April 27, 2010, I lost my father to melanoma.

Although not a day goes by where I don’t miss him, I now smile instead of cry because I know God chose my father for a reason. God knew who my father was, how many lives he touched in his short time here, and what those people were capable of. My parents’ friends founded the Wayne Stinchcomb Big Orange Foundation and has turned our tragedy into something amazing. Since Big Orange’s founding in 2010, there have been 11 new approved treatment options for melanoma, which we like to attribute in part to the $85,000 we’ve raised and donated to Melanoma Research Alliance. In addition to the funds we’ve raised, our advocacy and my father’s story has influenced many to get their skin checked and catch precancerous cells early.

People always say to me, “If only your father was diagnosed just one year later, he would’ve had treatment options,” but I don’t think about it like that. My dad was always the first one to try something new and the last one to give up. Whatever he did in life, he had to do it big and this rings true even for his battle with melanoma. The way I see it, my dad is one of the reasons all of these treatment options exist in the first place. Because of his journey and experiences with novel treatments, someone, somewhere is singing their daughter to sleep, kissing their wife goodnight, and waking up to a new day because they now have options when facing the monster that is melanoma.

Research Q&A: Dr. Tim Bullock

BullockIn the latest blog post, we chatted with the University of Virginia’s Tim Bullock, Ph.D., a tumor immunologist in the Pathology Department and MRA-funded investigator. Read on to learn what he has to say about melanoma research and prevention efforts.

Can you explain a bit about your research?

I received an Academic Industry Award from MRA, which was a fantastic segue from the more basic/translational tumor immunology we were well-versed in to getting me more exposed to (and appreciative of) the challenges and opportunities that are presented in clinical tumor immunology. It really helped establish our lab in truly translational research.

The grant led us to begin to understand what goes wrong with T cells in patients with melanoma. We’re conducting research now to look at the transcriptional basis of what’s wrong with tumor infiltrating T cells, looking at the genes that control T cell function, and what signals from the tumor microenvironment influence the expression of these genes. We’re trying to understand if we can identify critical differences in genes in T cells that are failing to control tumors compared to those that either control tumors or infections, so that once we understand them, they could either be biomarkers for effective anti PD-1 therapies or provide opportunities to complement anti-PD1 therapy.

We take a collaborative approach with investigators at UVA, so I value working with clinicians and researchers from a variety of backgrounds. We work in teams to look at how targeted therapies and more traditional chemotherapies affect newer immunotherapies to understand the cumulative effects of these treatments. The hope is that this will help us identifying rational combinations of tumor-targeting therapies that will work well with immunotherapies.

Can you explain how your research is helping making a difference for patients?

Our most recent funding, as an Established Investigator, uses a fairly novel technology called focused ultrasound. It’s a way of delivering acoustic energy, as opposed to the more traditional radiation, into tumors, with the intent of causing damage to the tumor that the immune system can respond to. It’s in early stages yet, so we need to understand how innate and adaptive immunity, and the tumor, respond to this type of “insult.” This is focusing specifically on melanoma brain metastases as there is such an unmet need in this patient population. We’re trying to answer important questions, like:

  • Can we use it to treat brain metastases (similarly to how it’s being used to treat Essential Tremors and patients with Parkinson’s Disease)?
  • How does the brain’s immune components respond?
  • Can we integrate this technology with immunotherapy?

There are a lot of unanswered questions, but our goal is to get it to patients as soon as possible. We’re integrating our work with biomedical engineers and have funded this collaboratively because many people see the potential for focused ultrasound. If efficacy is the same as radiation, this technology could provide a new approach meet the challenge of these poorly served patients.

How has MRA funding helped your work?

Each stage of my career, MRA has been there. The Young Investigator Award helped get my lab up and running. And the continued support through Academic-Industry Partnership and Established Investigator awards have helped sustain my work.

The funding has been important, but I also value the collaborative network that MRA has fostered. The Scientific Retreat is a relaxed setting to chat about real challenges and new opportunities.

MRA has a real enthusiasm for thinking outside the envelope. MRA provides the building blocks and foundation to get important research moving forward. MRA is notorious for that and it’s certainly had an impact on my career.

What do you hope to see more of in the future of melanoma research?

The future is understanding how to integrate these amazing therapies we have now. We’re trying to understand each patient’s disease to select the appropriate combination of therapies to treat them.  We can almost come up with a “prescription” for each patient. We’re also talking about real-time monitoring of tumors to identify mechanisms of adaptive resistance. This could allow us to develop counter responses by figuring out how to react in near real time.

This is absolutely personalized, precision medicine, and I think melanoma researchers and the MRA are going to lead it.

Can you share a little about yourself? What do you outside of the lab?

One of the things I enjoy most is coaching soccer. Right now I’m coaching U14 girls soccer.

 

 

A Daughter’s Take: My Mother’s Journey

This week, we’re pleased to welcome our youngest guest blogger, Sadie Kargman. Sadie’s sharing her family’s personal experience with melanoma and has committed to helping support MRA through fundraising. Read more.

Hi, my name is Sadie and when I was only in second grade my mom was diagnosed with melanoma. At first, considering, I was only 8 I didn’t quite know what was happening to my mom. As the weeks went by I noticed a pattern, she kept on going to the doctors or having them come over and getting what I called booboos (shots). Later when she finally sat down and explained what was happing to her it struck me. I could lose my mother.

kargmans

Sadie with her mom and dad

When she was getting the treatment she needed I wanted to do everything I could to help my mom. Because I was so young the only thing I could do was be extra nice and try to make my moms life a little bit easier, and trust that the doctors were doing everything they could.

Luckily for my family, my mom was able to beat cancer. Now that I am older I am thrilled to be able to help those afflicted with the same disease that my mom had.

When it came to picking a charity for my bat mitzvah the choice was easy. I wanted to work with the MRA because the cause was so near to my heart. Not only am I committed to raising money for the MRA but I am also passionate about spreading awareness about melanoma.During my time at sleep away camp I am always encouraging other girls to wear sunscreen and protect themselves from the sun.

Hopefully through my partnership with MRA I can learn even more about melanoma and help raise awareness so others can prevent getting the same disease as my mom had.

 

To learn more and help support Sadie’s efforts, visit her fundraising page.

8th Annual Scientific Retreat Recap

The end of February was a momentous one for the MRA team and all the folks in the melanoma community. We hosted our 8th Annual Scientific Retreat in Washington, DC, and they truly just seem to get better and better.

The Retreat serves two main roles for those invited participants. First, is the centerpiece of scientific knowledge sharing, as evidenced by the more than 20 MRA-funded investigators who presented at the meeting as well as several supplementary events and sessions aimed to provide a holistic look at the state of melanoma research and treatment. Secondly, the Retreat provides an opportunity for participants from all sectors to network. We consistently hear about the new collaborations to fight melanoma that arise from networking at this meeting.

Our Melanoma Forum opened the Retreat with a session about the continuing evolution of patient participation in the research process. It was attended by 50 patients, advocates, and supporters who shared their personal experiences to help advance our work by articulating the unmet needs and burden of the disease from those who understand it personally. Special thanks to Raj Kulkarni, an MRA Young Investigator at UCLA, and Kim McCleary of FasterCures for helping to build out this event.

MRARetreat_Selects-16Our lunchtime panel discussion (left), moderated by Mike Milken, featured four amazing thought leaders in melanoma. Drs. Boris Bastian of UCSF, Levi Garraway of Dana-Farber Cancer Institute, Lynn Schuchter of U Pennsylvania and Suzanne Topalian of Johns Hopkins University wo provided a look forward for the future of melanoma research.

In addition, we convened the growing group of MRA-funded Young Investigators to explore several key issues in clinical translation, while our Industry Roundtable meeting brought together representatives from the NCI, FDA, academia and industry to thoughtfully address challenges and opportunities for future collaboration on behalf of patients.

MRARetreat_Selects-19A highlight of the meeting was welcoming newly appointed FDA Commissioner Robert Califf (left), who came straight from his confirmation at the White House to deliver remarks to the MRA community.

It was truly a convergence of the brightest stars in the field and a community dedicated to achieving MRA’s mission of defeating melanoma. You can read more about in blog posts from Dr. Len, of the American Cancer Society, and T.J. Sharpe, a melanoma survivor who blogs for Philly.com.

We thank everyone who came to participate in the meeting, as well as our sponsors, who all helped make our 8th Annual Scientific Retreat a success!

 

 

Understanding Immunotherapy Part 2: PD-1

By Amrita Bhatt, MRA Intern

Now that we’ve provided a brief background on immunotherapy, it’s time to dive more deeply into the subject. In the second installment of this blog series, we’ll be examining PD-1, a protein that plays a crucial role in cancer’s ability to hide from our immune systems.

What is PD-1?

PD-1 is a protein found on certain immune cells, including a type of white blood cell known as a T cell. When PD-1 links up with its partner protein, PD-L1, a signal is sent to the T cells to shut down. Usually, this is used as a means to prevent the development of out-of-control immune activity that could lead to auto-immune disease. Unfortunately, the same PD-1/PD-L1 signal can be used by tumors to turn off T-cells and thereby help the tumors avoid being destroyed by the immune system.

What anti-PD-1 drugs are available now?

Two anti-PD-1 drugs have been approved by the FDA – Nivolumab (Opdivo®) and Pembrolizumab (Keytruda®). These drugs block PD-1 and free up the T cells to attack the cancer. Additionally, the combination therapy of Nivolumab and Ipilimumab (Yervoy®), an anti-CTLA4 drug, was approved just this past year.  First FDA-approved in melanoma, these anti-PD-1 treatments are also available for kidney and lung cancer patients, and the data are encouraging in a number of other cancers as well.

What type of anti-PD-1 research has MRA funded?

With melanoma serving as the lead for immunotherapy across various cancer types, research funded by MRA has played a pivotal role in advancing the field. Funding from an MRA Team Science Award to Drs. Drew Pardoll, Suzanne Topalian, and Lieping Chen at Johns Hopkins University provided some of the earliest observations on the role of PD-L1 as a potential biomarker in melanoma, lung, and prostate cancer patients. Correlating the expression of PD-L1 to treatment response has contributed to understanding its best use as a biomarker for cancer therapy.

Watch this video to learn more about research on immunotherapy that blocks the PD-1/PD-L1 pathway:

MRA has funded a number of studies on biomarkers for immunotherapy.  In partnership with the Lung Cancer Research Foundation and Lungevity, MRA-funded Young Investigator Dr. Lucia Jilaveanu is conducting research to identify biomarkers that relate to pembolizumab treatment in patients with metastatic brain disease. This partnership allows for powerful insight across cancers, as brain metastasis is a common feature of both melanoma and lung cancer. MRA is also currently funding the melanoma supplement of the SU2C-CRI Immunology Dream Team co-led by Drs. James Allison and Antoni Ribas. Their studies aim to identify biomarkers of response in patients treated with ipilimumab, nivolumab, and a combination of the two.

What’s Next?

With the potential to help combat not only melanoma, but many other types of cancers, anti-PD-1 therapy provides great promise. Melanoma is referred to as the case study for this new wave of cancer therapy, and researchers are now exploring immunotherapy across many cancer types. As MRA-funded researchers continue to study the mechanisms underlying therapy response and resistance, more and more patients will benefit from the knowledge gained.

 

Keep a look out for our next post discussing another protein integral to cancer’s ability to evade our immune systems – CTLA-4.

Gearing up for our Annual Scientific Retreat

The Melanoma Research Alliance’s (MRA) annual Scientific Retreat brings together hundreds of scientists, industry professionals, and patients from around the globe to foster collaboration in the field of melanoma research. This year, MRA will host its eighth retreat from February 24-26 in Washington, DC.

This year’s scientific sessions begin with a discussion on potential new therapy targets. Scientists from a variety of institutions, including Duke University and Sheba Medical Center in Israel, will discuss advances in the fields of targeted therapy and immunotherapy. In addition to discussing therapies, a prevention-focused afternoon session will address the pros and cons of mandatory skin screening and the self-screening process.

In efforts to include the expanding role of patients in the research process, this year’s Retreat will include a Melanoma Forum geared toward patients, caregivers, advocates and supporters. Moderated by FasterCuresKim McCleary, patients will be invited to an interactive discussion on their active involvement in research. The forum will provide an excellent venue for patients to engage in discussion and meet other individuals who share a common goal for the future of melanoma research.

flaherty, sigal, topalian

Participants at the 2015 MRA Scientific Retreat

The MRA team is excited to host this extraordinary group of individuals under one roof. Our Chief Science Officer, Louise M. Perkins, Ph.D., is looking forward to seeing so many close colleagues and friends from the melanoma research sphere. “There’s no event quite like this to share the latest in research and to build new collaborations.”

Tasheema Prince, Scientific Program Manager, joined MRA in 2015, and is anticipating her first retreat. “It’s essentially a glimpse into the collective fight to end melanoma and I’m very excited to witness a convening of bright scientific minds in the field,” explains Prince.

We hope the retreat allows individuals to build valuable relationships and accelerate momentum in the field of melanoma research, and ultimately help more patients overcome this disease.

To get more details on the Scientific Retreat visit our website to see a draft agenda and learn more about the event.