Joedance Film Festival

Benefiting Rare Pediatric Cancer Research
Giving Tuesday 2021 150 150 Joedance Film Festival

Giving Tuesday 2021

GIVING TUESDAY 2021

It comes every year.  Just like the new year, annual holidays, birthdays and anniversaries. This day, Giving Tuesday, is one of the most focused and potentially the largest fundraising day for nonprofits around the world.  It is a time for a universal ask from nonprofits.  Matching fund programs are announced for this one day.  There are thermometers closely gauging the rise of donations received.  The asks are anywhere from donations, in-kind support, ambassadors and volunteers

Giving Tuesday is just that – one day.  At Joedance we work as if everyday is Giving Tuesday.  There is not a day that goes by that myself, our board members and our supporters talk about the impact our donations have at Levine Children’s.

Through the Joedance Internship Program data has been collected, published and new protocols put in place for Healios, the backpack program and Supportive Medicine.  The most recent intern is working in the Neuro-Oncology department collecting data for future research projects for brain tumors. The Research Technician III has been funded through donations to Levine Children’s from Joedance. Just these two programs will make a difference every day in advancing better treatments with better outcomes for kids with cancer.

Yes, Giving Tuesday is tomorrow and Joedance like many, many other nonprofits will participate.  But be assured we will continue to work Every Month. Every Week. Every Day.™ to fulfill Joe’s legacy list.

I personally invite you to continue to support Joedance and Joe’s vision of making a difference and advancing research for pediatric cancer everyday.  And I personally thank you. Because of your support we have made very important changes that have improved pediatric cancer treatments.  

With appreciation,

Diane 

Joedance: A Community Rich In Storytelling And Companionship 150 150 Joedance Film Festival

Joedance: A Community Rich In Storytelling And Companionship

films.jpeg

If you’ve been following along, you probably know by now that we’re BIG on building community at Joedance! Community support is a pillar of Joedance with a deeply rooted meaning that stems from one of Joe’s final revelations he shared in his speech at McCallie. He spoke about the importance of community while fighting a disease so powerful. Joe used his community to regain strength time and time again. Now, over a decade later, we’re thankful for the strength and encouragement we’ve received from our communities – we truly wouldn’t be here without your support!

One community we’re thankful for is our talented group of filmmakers. Each year we ask our filmmakers the question, “Why do you Joedance?” Their answers always motivate and inspire us! But, beyond the festival, the filmmakers have a community that’s rich in collaboration, storytelling, and companionship. We sat down with one filmmaker to learn more about companionship behind the scenes.

Friendships In Filmmaking

“The community created by Joedance filmmakers is rich in strong storytelling and companionship,” said Andrew Huggins, a veteran Joedance filmmaker. “I’m friends with many of the filmmakers that have been involved in Joedance, and each of us considers our involvement in this community to be one of our most substantial achievements as filmmakers,” he said.

We’ve met so many talented filmmakers over the past decade. It’s truly an honor to hear that they hold Joedance in such high regard! In the beginning, the Restaino family didn’t know a lot about filmmaking, but they did enjoy watching films together. Now, all of the directors, producers, writers, and actors in the film community have become part of our Joedance community giving us greater strength and support – just like Joe said in his McCallie speech.

Storytelling Is An Art That Requires Collaboration

“I feel like we have a duty to every audience member to deliver an entertaining experience, but also a deeply emotional one,” said Huggins. Sometimes great storytelling requires collaboration. And when our Joedance filmmakers join forces, the results are always phenomenal!

“John Sexton and his wife Donna Whitmore-Sexton reached out to me a few years ago about collaborating on their short film, Curb Service. We had such a blast making that film that we just finished our third film together last fall, Grave Talk,” said Huggins on his recent collaboration with John and Donna. “Creating a story then getting to express its details with a camera and actors is something I don’t take for granted and am very blessed to have been able to do for years here in North Carolina,” he said.

Join Our Growing Community

Each year, members of the film community gather not only in support of their films but also our cause. Together, we’ve created a community that’s rich in friendship, support, talent, and ongoing motivation to raise funds and awareness for pediatric cancer research at Atrium Health’s Levine Children’s.

There are so many opportunities to join our Joedance community beyond the film festival. Whether through a donation, volunteering, or becoming a G.E.M., your small contribution adds up in a BIG way when it comes to the fight against pediatric cancer.

No Child Left Behind….The Importance of Secondary Funding 150 150 Joedance Film Festival

No Child Left Behind….The Importance of Secondary Funding


david.png

This week Tony brings to light important information regarding the lack of governmental funding for pediatric cancer. Advancements in better treatments with better outcomes come directly from private funding and donations to make real change happen.

Warning: Hello everyone, it’s Tony again here to let you know that this blog post will once again not be written by the more linguistically inclined twin. Apologies in advance. This week on Tony’s journey through cancer research we will briefly talk about the largest source of funding in basicbiomedical research, the NIH, and how important secondary sources of funding for pediatric cancer is for researchers. Side note: I am currently in the middle of writing my grant proposal for a NIH fellowship (think of it like the kid’s meal version of an NIH grant).

A quick overview on the NIH and government grants for biomedical research. The NIH is divided into 27 institutes, each overseeing a particular area of biomedical research and study, with almost all of cancer research projects funded through the National Cancer Institute. Arguably the most impactful and important grant that researchers apply for is called an R01 grant, which provides a large amount of funding to a proposed project for between 4 to 5 years.

How hard is it to get these grants? Great question!

According to the NIH, their funding success rate for applicants is 20%. If we break that down by institute, the funding success rate for the NCI is about 11%. Let’s look at two key aspects of the funding process: the grant awarding process and the funding of the NIH and how that impacts grant funding.

NIH grants are scored by reviewers, a panel of experts in the field, based on several criteria, including a research plan, possible impact of research, and the research history of the individual, or individuals, who proposes the grant project.

According to the NIH, only 4% of the NCI’s research budget funds studies focused on pediatric cancers.

This leads us into our second consideration: the funding of the NIH. While NIH funding has increased steadily of the last decade, when corrected for inflation the NIH budget has decreased. Furthermore, since the NIH is part of the department of Health and Human Services, its budget is determined by the government, meaning that the NIH budget can get slashed by Congress at any time for any reason. Additionally, due to finite resources, the NIH wants to get the highest return on their investments, and thus take into consideration the prevalence of diseases being researched. I am sure it would not shock you to learn that there are more adults diagnosed with cancer than children, however this also correlates to potential funding of cancer research.

According to the NIH, only 4% of the NCI’s research budget funds studies focused on pediatric cancers.

Breast cancer research received almost 12% of the NCI’s research budget.

Taken together, an uncomfortable picture easily emerges. Due to the criteria the NIH uses to rank grants for funding, the increasing pressure on researchers to acquire NIH funding early on in their careers, and the low level of funding for pediatric cancer research from the NIH, it is risky for researchers to pursue this area of cancer research. The culture of funding at the NIH pushes researchers into pursuing highly funded fields of research and impedes potential studies into areas of research with narrower funding opportunities. Furthermore, due to these focuses the population of pediatricians trained as scientists has diminished as well. PhDs and MD/PhDs are less likely to enter a field of research where funding is uncertain.

This is why non-governmental funding sources, like Joedance, are so important and valuable to researchers.

While pediatric cancers receive a small fraction of the NCI funding budget, nearly half, or about $175 million dollars, of pediatric cancer funding comes from non-profit organizations. We know from the history of diseases like HIV/AIDS that funding research saves lives. Without sources of funding, research can’t be conducted. Without research being conducted, treatment and survival can’t be improved. While the NIH is a vital source of funding, receiving NIH grants can be time consuming and repetitive, and many, including members of the NIH, argue that its structure is flawed, but it is not the only avenue for researchers to gain support. Every day we can assist in progressing the field forward, with giving patients a little more hope.

It’s a responsibility to show these patients, these physicians, and these researchers that their work and their struggle matters. It’s a responsibility we take on every day.

Sources:

Daniels RJ. A generation at risk: young investigators and the future of the biomedical workforce. Proc Natl Acad Sci U S A. 2015 Jan 13;112(2):313-8. doi: 10.1073/pnas.1418761112. Epub 2015 Jan 5. PMID: 25561560; PMCID: PMC4299207.

Kamath SD, Kircher SM, Benson AB. Comparison of Cancer Burden and Nonprofit Organization Funding Reveals Disparities in Funding Across Cancer Types. J Natl Compr Canc Netw. 2019 Jul 1;17(7):849-854. doi: 10.6004/jnccn.2018.7280. PMID: 31319386.

Germain RN. Healing the NIH-Funded Biomedical Research Enterprise. Cell. 2015 Jun 18;161(7):1485-91. doi: 10.1016/j.cell.2015.05.052. PMID: 26091028; PMCID: PMC4495897.

Alberts B, Kirschner MW, Tilghman S, Varmus H. Opinion: Addressing systemic problems in the biomedical research enterprise. Proc Natl Acad Sci U S A. 2015 Feb 17;112(7):1912-3. doi:10.1073/pnas.1500969112. PMID: 25691698; PMCID: PMC4343141.

I Whisperd In His Ear 150 150 Joedance Film Festival

I Whisperd In His Ear


Screen Shot 2021-03-02 at 8.34.41 PM.png

Joe was angry. Not his regular slow burn, but full-blown rage.

During dinner, he proclaimed, “I am going to backpack through Europe. Not sure when I will be back. Don’t count on hearing from me.” Escape and control were most likely the whole reason for the proclamation. He hadn’t had either of those for a very long time.

Soon after that proclamation, Mike and I stood outside airport security as Joe hefted his backpack onto his shoulders. I remember how they sagged under the weight, but he stood straight and looked us in the eye when we said one last goodbye.

I hugged him and whispered in his ear, ‘Please be safe. Come back home.’

He called rarely, emailed only slightly more regularly. His correspondence was regulated to facts: where he was, how long he had been there. He shared his photos: him on a night train out of Paris, a man lounging outside a casino in Monaco, water cresting beneath the bow of a boat in Lake Como. About halfway through, he sent one such email with an attached photo. It was in Interlachen just before he did cliff jumping. I took in the dark rings around his eyes, the color of his skin, his thin body, and his pronounced brow.

His cancer had returned. I remember feeling a spike of anger, at both him and myself.

He went off by himself, knowing this was highly likely to happen, and I let him go knowing the same. That was three weeks before he came home. Joe pushed on to finish his trip alone.

Joe’s treatment was marred with moments like this. Pushing people away, telling everyone he was fine. There is an isolating factor to cancer that during chemo is a necessity. It protects the patient from potentially fatal infections when they are immuno-compromised. Joe, always the overachiever, took that probably too far. He tried so hard to hold everything close and keep it away from everyone else. It wasn’t until after his trip, when the end was starkly pronounced, that something shifted.

In his Senior Chapel Talk to his high school, Joe said: ‘Life seems to throw the worst at us when we are at our best, when we think nothing can touch us. We are all forced to face these situations some time in your life, and when you do, when you face something that you believe you will never make it through, don’t go it alone.’

I learned something from him, as well. There is only one way to be alone, but many ways to stand by someone in difficult times. I do not regret letting Joe go on that final trip alone. It was one he desperately needed. To not have what was happening, what we all knew on some level was going to happen, shoved in his face over and over. He was able to go because he knew we were here, the whole time. A tether keeping him grounded. A place to return. He was by himself, but never alone.

Joedance allows me a way to continue to let people know that they are not alone. I feel the need to push on, as Joe did in Europe, to continue to raise funds for pediatric cancer research. To find better treatments with better outcomes. Our donations are not simply a monetary value that adds up to new lab equipment or a salary for a lab technician. It is a reminder to everyone that they are not alone. That we see them and that we are here. That we are always here.

What is a CyTOF machine? Why is it important for cancer research? 150 150 Joedance Film Festival

What is a CyTOF machine? Why is it important for cancer research?



Al McMillian, Board Chair of Joedance Film Festival, seeing the CyTOF machine up close while touring the pediatric cancer research lab.png

Warning: Unlike the posts written (primarily) by David, this post might come across as dry, boring, lifeless, and technical.

However, that doesn’t make it any less important to read. To make this as painless as possible, I will try and avoid my usual problem of getting too in the weeds.

A question that seems to be asked amongst both our many supporters, friends, and board members is why was the hospital so excited about being able to purchase a CyTOF machine?

What does it do?

How is it used to better research cancer?

All completely valid questions; one that has many answers. We will focus on just one aspect of this discussion.

One area of cancer research that has been gaining tremendous focus and traction in the past few decades is the role of the tumor microenvironment in cancer progression, and how the immune system is involved in this environment.

Instead of thinking of cancer as a bunch of cells that have gone rogue, many scientists and doctors have started to view it more as an organ, with a bunch of different cells working together to provide a space for cancer cells to be able to freely and rapidly grow and metastasize.

As stated above, one major focus of this environment is immune cells that comprise this space (note: the immune system and its functions are incredibly complex, we will not address that in detail here for the sake of everyone’s sanity). In response to the immune systems’ role in cancer, immunotherapies have been an increasingly growing field for new therapies for cancers. So not only does the immune system play an important role in cancer pathology, but it also is an increasing target for therapeutics.

So, the question now is, how do scientists study the immune system and its role in cancer?

One main tool that is used is a process called flow cytometry. This is a device that is used to sort cells based, most commonly, by tagging and separating cells using fluorescently tagged antibodies specific to cell antigens. Speaking from experience I can tell you that there are some difficulties and limitations that come with this process. A major one is the limitation of the number fluorescent antibodies that can be used to help identify cell populations, generally maxing out at about 15 or so antibodies. The moreantibodies you include in your panel, the more likely you are to have less defined populations due to a “bleeding” effect, where fluorescent antibodies of similar wavelengths create less defined populations.

As such, fluorescence mediated flow cytometry has limitations in the specificity and number of immune cell populations seen in the tumor microenvironment.

This is where the CyTOF machine improves our ability to study the immune system in cancer.

Instead of using fluorescent antibodies, this flow cytometry machine uses antibodies tagged with heavy metal isotopes and utilizes a process like mass spectrometry to provide analysis of single cells based on the ions that are collected, and populations can be identified. Furthermore, due to using mass spectrometry, which measures mass-to-charge ratio of ions, the number of antibodies that can be included in the analysis easily exceeds the number used in fluorescent flow cytometry, estimated to be more than 100 antibodies. Thus, CyTOF analysis can provide for greater sensitivity for the detection of immune cell populations, a greater number of parameters to further identify and define cell populations, and it eliminates the “bleeding” effect that introduces errors when using fluorescent antibodies.

In summary, the CyTOF machine allows scientists to identify specific and unique immune cell populations present in the tumor microenvironment. The identification of these populations will increase our understanding of how the immune system provides support and protection for cancer to progress and metastasize, and additionally provide targets that can be isolated for the development of new therapies and treatments.


Al McMillian, Board Chair of Joedance Film Festival, seeing the CyTOF machine up close while touring the pediatric cancer research lab (1).png

Citations

Cheung, R. K., & Utz, P. J. (2011). Screening: CyTOF-the next generation of cell detection.Nature reviews. Rheumatology,7(9), 502–503. https://doi.org/10.1038/nrrheum.2011.110

Bendall, S., Nolan, G. From single cells to deep phenotypes in cancer. Nat Biotechnol 30, 639–647 (2012). https://doi.org/10.1038/nbt.2283

Binnewies, M., Roberts, E. W., Kersten, K., Chan, V., Fearon, D. F., Merad, M., Coussens, L. M., Gabrilovich, D. I., Ostrand-Rosenberg, S., Hedrick, C. C., Vonderheide, R. H., Pittet, M. J., Jain, R. K., Zou, W., Howcroft, T. K., Woodhouse, E. C., Weinberg, R. A., & Krummel, M. F. (2018). Understanding the tumor immune microenvironment (TIME) for effective therapy. Nature medicine,24(5), 541–550. https://doi.org/10.1038/s41591-018-0014-x

Hanahan, D., & Weinberg, R. A. (2011). Hallmarks of cancer: the next generation. Cell, 144(5), 646–674. https://doi.org/10.1016/j.cell.2011.02.013

To Twist; to Thrive 150 150 Joedance Film Festival

To Twist; to Thrive


blog us.jpeg

This past year so much and so little happened at the same time it was as if time had wrinkled in on itself. A paradox of things and happening and not happening all simultaneously. We lived in a fold, inside a pocket. We couldn’t do anything, and yet we still moved forward. That’s the contradictory nature of humanity, though. We adapt. We twist ourselves to live no matter our environment. The reason we can do that, I believe, is something inherently interior that demands for us to not simply survive, but to thrive.

Like many others, we found ourselves at Joedance scrambling to function during the tragedy of the coronavirus pandemic. How do we hold a film festival when it is no longer safe for large groups to congregate? How does a film festival continue to support Levine Children’s if we can’t host a film festival? How do we honor the work of the filmmakers that have already submitted their work to us months ago?

Our decision to move the festival to a virtual platform was made in desperation. We took that, as mankind is accustomed to do, and twisted it. We are so pleased to announce that we donated $50,000 this year to Levine Children’s, the largest donation in Joedance history.

Furthermore, with this donation Joedance will have successfully checked off the last item on Joe’s Legacy List – be a driving force of research every day. Joedance will fund a Lab Technician to operate a very specialized piece of equipment, a CyToF machine. This will speed up the process of studying effects of inflammation on cancer cells as it relates treatment outcomes.

None of this would have been possible on my own. I am so thankful to my board for their tireless work and flexibility, to the filmmakers for their trust in us, to our sponsors for their constant backing, and to each and every one of you who continue to support us year after year. Because of all of you, we were able to thrive.

A Final List 150 150 Joedance Film Festival

A Final List


Untitled design (2).png

Joe, Mike, and I left the house just before four a.m. that morning. Mike made the coffee extra strong and the smell filled the interior of the car almost as soon as we closed the doors. As the engine rolled over, Joe slumped against the window to get a few more hours of sleep. Mike turned the car north while I sipped the burnt coffee. We drove in a sluggish haze until a more humane hour.

We picked up Joe’s friend, Steven Green, at the DC train station before we made our way to the Mall. We were jostled into place by the crowd, or maybe we jostled the crowd into place around us. Then all of us, bundled in the most winter clothes I have worn since living in South Dakota, watched as Barack Obama was sworn in as President of the United States. We stood in silence, frost blooming on our breath, as we bared witness.

Joe voted for the first time in that 2008 election. It was the only time he ever voted. It was the first of many lasts that year.

Joe’s cancer returned for the last time during Christmas 2008. When the doctors said there was nothing left to do, Joe went home and made a list. He liked making lists. He liked when the things on those lists were crossed off even more.

Some things he wanted us to do as a family. Such as when we followed in his wake and spent five days on a sailboat in Florida learning how to navigate the ocean by outcroppings of rocks along the coast and how to lean into the wind.

Other things he did on his own. The three months he spent in Europe, for example. His only true taste of independence. A life completely separate from everything he knew. Stories he shared, but never fully. Things that were his alone till the very end.

And in the end, after seeing what he could and long-distance drives to see friends as the summer set in and then slowly waned in a drawn-out yawn, he returned home. As the nights grew longer and closed in around us, we spent those days together.

We choose how we are remembered.

The stories we spin and the people we connect with, those are the only things we truly leave behind. At the end, Joe left a list for all of us. To help us focus our grief, perhaps. Or maybe just because he wanted to tell us all what to do a final time. Maybe both. He was good at multitasking, probably on account of all the lists.

Joe chose what he wanted his story to be, in the end. A story I am proud to be a part of; a story I am proud to tell.

Why I Give.Every.Month. 150 150 Joedance Film Festival

Why I Give.Every.Month.

Written By Emily Portal, Longtime Supporter


Untitled design.png

There was much anticipation for the new year. On January 1 we find ourselves wishing family, friends, co-workers, acquaintances “Happy New Year.” Out of habit we could find ourselves wishing others Happy New Year for what seems like more than a month straight.

What other habits do we take through the year? Do we follow through on our New Year’s resolution to exercise more, eat healthy, to stop procrastinating? Will our 2021 New Year’s resolution look different than years before it?

This year more than ever we are searching for human connection. The two-week lockdown has snowballed into months and more months of isolation and monotony blurring into the year following. 2021 feels like a new start and reset yet the landscape around us hasn’t drastically changed.

But there is a change I am personally making in the new year. I have committed to a new monthly habit that is bigger than just myself, becoming a G.E.M. for Joedance. Each G.E.M. will Give. Every. Month. as through regular and consistent donations Joedance is better able to advance the care for pediatric cancer patients at Atrium Health Levine Children’s.

In the grand scheme of things my gift is small- $10. But for the next 12 months my $10 will be $120. Some corporate companies will even 100% match employees’ charitable donations. I have friends and colleagues that are also giving each month-starting at $5 per month- so collectively our impact is much greater. Together we are ensuring Joedance as an organization is able to do more for the patients at Levine Children’s.

If 120 individuals become a G.E.M. each month of 2021 at $10 per month we could raise over $14,400 to help honor Joe’s legacy list and fund research to find better treatments with better outcomes for those with pediatric cancer.

Over the nearly 10 years I’ve been involved in Joedance I have been able to see many successful research projects. There’s been the introduction of Healios, a flavored liquid that lessens the severity of mouth sores for patients as well as implementation of more integrative medicine. I’ve seen the backpack project which created cost-saving and home-based treatment monitoring.

2020 for Joedance was incredibly impactful. Our community of donors helped move forward real advancements at Levine Children’s through funding a full-time lab tech to support research of the effects of inflammation on cancer and cancer treatment. It is one of only 30 hospitals in the country to have a CyToF machine to make this research possible.

I am proud to be a G.E.M. and Give.Every.Month. Finally, I’ve found a New Year’s Resolution I will be able to stick to.

The Golden Birthday 150 150 Joedance Film Festival

The Golden Birthday

This blog was originally written by Diane Restaino on December 21, 2010, in honor of Joe’s 21st Birthday. Today, Joe would be turning 31.


Joe 21.jpeg

Today, Joe, you would be 21 on December 21, so this is your golden birthday. Instead, it will be me, your dad, Tony and David remembering you along with aunts, uncles, grandparents and friends. We planned to change our venue and go to a place we have never been before hoping to separate us from the pain, but after Tony’s surgery we will be at home. Our new plans are to put the tree up and fill it with Tony, David’s and your ornaments. Then we will move on to a movie, one we think you would have picked and of course chomp down a large bag of popcorn.

You asked me a year or so ago at the beach “What was I like as a child?” I knew you had no memories before 2008 and your second chemotherapy, so we talked for a long time about your childhood. How you needed, wanted matching socks to your shirts, how you helped me with the twins when they were battling asthma and allergies, how you spent hours putting small sticks between the slats of our deck. How you would build legos and the fact that you loved Pavarroti and the three tenors. You would watch videos of their performances pretending to conduct using old church bulletins as your sheet music. You wrote a paper when Mr. Rogers died, who was your hero. And you always made sure your brothers and friends were going in the right direction. You never took a picture without your arms draped around your brothers or friends. How you could never finish an art project until McCallie. We talked about how you changed your name when you were three and how we knew then you had your own path to follow and we were along for the incredible ride.

And it was an incredible ride and we thank every day we had a seat. In the end you loved us and we loved you and that was all you cared about.

Happy Holidays 150 150 Joedance Film Festival

Happy Holidays


Screen Shot 2020-12-16 at 8.36.24 PM.png


Screen Shot 2020-12-16 at 8.36.48 PM.png

Like many families, mine will not be gathering this year for the holidays. For the first time in thirty-one years, it will only be Mike and myself at the dinner table.

We are fortunate that we will have the ability to video chat with our boys on Christmas day (shout out to Zoom, which has kept millions of people in touch this year). But we know it will not be the same.

This shift in our plans has made me think a lot about the ways in which we connect to one another and build a community. How those connections keep us grounded and anchored in a world in which we have very little control.

After Joe’s death, our family felt untethered. We spent so long focused on him and his treatment and built our lives around that. It was an unsettling moment for us trying to recalibrate ourselves in a world where that no longer existed. So much of what happened was out of our control. I learned to start small, near my focus. Like cleaning a house one room at a time. I focused on one thing I could make sane and built from there.

Joedance became that first room for me. Through founding Joedance Film Festival, the people who supported us and worked alongside us in our efforts, I was able to find that community again and was able to find my feet. Every year of Joedance is special to our organization, but you made this year the most memorable. Every goal set for fundraising and engagement was achieved.

So, this year, as we enter a very different Holiday season, I want to thank our Joedance community. Our sponsors and donors, supporters and filmmakers near and far. I am honored to have you by our side and look forward to your continued support as we continue to move forward.

We wish you all a happy and safe holiday.