Just The First Step
This story is made possible by:
The origin of the Pediatric Rare Disease Collection
It comes as no surprise that wishes have the power to change a child’s life, but what surprised me is how it changed mine. Being witness to the granting of Aubriella’s wish left an indelible impression on me. She showed me how powerful it is for many of these families who are going through unfathomably difficult circumstances to be given an opportunity to be fully present for the joy of spending time together as a family. Aubriella inspired me to create a collection specifically for pediatric rare disease.
The second film for the Pediatric Rare Disease collection was made possible by the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them. For this project I connected with Make-A-Wish® MA & RI to find a viewpoint of wish granting for a rare disease family that was a little bit different. Together we developed the concept for a film that depicted how a wish is more than what it may seem on the surface.
“Rare Disease” isn’t so rare after all
Often times the term rare disease conjures up the idea that it’s far removed from most people’s lives when in reality rare diagnoses collectively affect many people. *One recent study estimated that rare diseases affect between 6% and 8% of the global population. When I set out to find a family for the Sony Alpha Female+ Grant project I didn’t have to look far. In the town next to mine is a family with a little fighter named Conor who battled brain tumors. You’ll have to watch the film to hear his story but you want to know something really crazy? I didn’t realize it until I showed up at the family’s doorstep that I went to high school with Conor’s dad. So again, rare disease isn’t so rare after all.
*Wakap SN, Lambert DM, Alry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database [published online September 16, 2019]. Eur J Hum Genet. doi: 10.1038/s41431-019-0508-0.
This story is made possible by:
The origin of the Pediatric Rare Disease Collection
It comes as no surprise that wishes have the power to change a child’s life, but what surprised me is how it changed mine. Being witness to the granting of Aubriella’s wish left an indelible impression on me. She showed me how powerful it is for many of these families who are going through unfathomably difficult circumstances to be given an opportunity to be fully present for the joy of spending time together as a family. Aubriella inspired me to create a collection specifically for pediatric rare disease.
The second film for the Pediatric Rare Disease collection was made possible by the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them. For this project I connected with Make-A-Wish® MA & RI to find a viewpoint of wish granting for a rare disease family that was a little bit different. Together we developed the concept for a film that depicted how a wish is more than what it may seem on the surface.
“Rare Disease” isn’t so rare after all
Often times the term rare disease conjures up the idea that it’s far removed from most people’s lives when in reality rare diagnoses collectively affect many people. *One recent study estimated that rare diseases affect between 6% and 8% of the global population. When I set out to find a family for the Sony Alpha Female+ Grant project I didn’t have to look far. In the town next to mine is a family with a little fighter named Conor who battled brain tumors. You’ll have to watch the film to hear his story but you want to know something really crazy? I didn’t realize it until I showed up at the family’s doorstep that I went to high school with Conor’s dad. So again, rare disease isn’t so rare after all.
*Wakap SN, Lambert DM, Alry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database [published online September 16, 2019]. Eur J Hum Genet. doi: 10.1038/s41431-019-0508-0.
From The Heart - Documentary Sneek Peek!
Superman Sammy is a fighter
I have heard from numerous families with prenatal rare disease diagnoses who felt as though they were being pressured into strongly considering abortion. This space is NOT to argue pro-life or pro-choice. What is important is to recognize the importance of this family’s decision and that they were encouraged to seek out multiple opinions. As you will see in this sneek peek, when Sammy’s parents first received the diagnosis at their anatomy scan, doctors were concerned that Sammy might not even make it to term and were not familiar with treatments available for his rare genetic heart defect. After an excruciating few days of waiting to see a specialist at Cincinatti Children’s, they learned that many kids with this condition were able to thrive with a series of surgeries. In the full documentary the family will share more about the journey that led to an unexpected heart transplant. Sammy continues to show that he is resilient and lives childhood to the fullest. Unless you saw the scar on his chest, you probably wouldn’t have any idea what he has been through just by looking at him.
Illness affects the whole family
From a young age I learned that a life-changing diagnosis affects the whole family. At the age of twelve my mom was diagnosed with MS and it forever changed my life. Because of this, it was important to me that I include Sammy’s sister Sophia as much as possible. She was a little more shy about talking in front of the camera but you’ll see that as much as possible I captured how she was part of every moment. These are her memories, challenges, and triumphs too. I want her to remember that she’s not going through this alone either. So when you come across a family who is dealing with a difficult diagnosis please remember to support the whole family, not just the person who is affected.
Give Kids The World Village
Did you know that historically one out of every two wishes granted for kids with critical illness is for Disney a wish?* Most of the families who visit Disney World in Florida stay at a magical resort called Give Kids The World Village. With the help of partnering wish-granting organizations like A Special Wish of Southwest Ohio, Give Kids The World Village has welcomed more than 188,000 families from all 50 states and 77 countries.** In Sammy’s sneek peek, you’ll see a room full of stars on the ceilings and walls. Every wish kid who goes there gets to decorate their own star and overnight a magic fairy named Stellar puts their star up in spot that is catalogued so the family can find it when the return for an alumni trip.
If you haven’t experienced kids the world for yourself you might not fully comprehend the magic of these trips, but we hope this gives you a little window into how important wish granting is for families like Sammy’s.
*https://wish.org/disney#:~:text=Since%201980%2C%20Disney%20and%20Make,has%20been%20a%20Disney%20wish.
**https://www.gktw.org/about/
Opening up about his "invisible" disease
This story is made possible by:
People don’t buy what you do, they buy why you do it.
The foundation of trust begins with your audience connecting to your honest intentions. By sharing the “why” story of your company’s founders or leaders, you can connect with your audience on a deeper level, building both trust and loyalty. Customers are more likely to support a brand that shares their values and beliefs.
As a member of the Board for the CMT Research Foundation, Peter was asked to lead a $10 million capital campaign for the CMT Research Foundation. He was well-suited for the task because he is a very adept executive leader, but the primary challenge he faced was that he had never shared with coworkers and business partners because of the fear that they would see him differently. As you can imagine, sharing his story for the first time was difficult to do, but with the help of this film he was able to help the CMTRF raise over $1.2 million at a fundraising event.
A wish that keeps on giving
This story is made possible by:
The origin of the Pediatric Rare Disease Collection
It comes as no surprise that wishes have the power to change a child’s life, but what surprised me is how it changed mine. Being witness to the granting of Aubriella’s wish left an indelible impression on me. She showed me how powerful it is for many of these families who are going through unfathomably difficult circumstances to be given an opportunity to be fully present for the joy of spending time together as a family. Aubriella inspired me to create a collection specifically for pediatric rare disease.
The second film for the Pediatric Rare Disease collection was made possible by the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them. For this project I connected with Make-A-Wish® MA & RI to find a viewpoint of wish granting for a rare disease family that was a little bit different. Together we developed the concept for a film that depicted how a wish is more than what it may seem on the surface.
“Rare Disease” isn’t so rare after all
Often times the term rare disease conjures up the idea that it’s far removed from most people’s lives when in reality rare diagnoses collectively affect many people. *One recent study estimated that rare diseases affect between 6% and 8% of the global population. When I set out to find a family for the Sony Alpha Female+ Grant project I didn’t have to look far. In the town next to mine is a family with a little fighter named Conor who battled brain tumors. You’ll have to watch the film to hear his story but you want to know something really crazy? I didn’t realize it until I showed up at the family’s doorstep that I went to high school with Conor’s dad. So again, rare disease isn’t so rare after all.
*Wakap SN, Lambert DM, Alry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database [published online September 16, 2019]. Eur J Hum Genet. doi: 10.1038/s41431-019-0508-0.
Equitable arts in accessible spaces
THE CHALLENGE
For six years, Laura Marotta and Stacy Lord have been actively pursuing their dream to create “an equitable arts program in accessible spaces.” But what does that really mean? Communicating how their vision is more than just a community center for arts has been their biggest challenge. While fundraising for a 15-million dollar capital campaign, investors wanted to know they are doing something unique, which they undoubtedly are, but trying to explain their vision in the context of equity and inclusion was challenging to do when the 36,000 historic building they will be renovating is still in disrepair. Together, we had to come up with a creative strategy to show what it felt like to be part of a program that didn’t exist yet.
CREATING AN EXPERIENCE
Our challenge was taking a complex concept and representing it visually in a way their audience could experience the excitement of their endeavor.The core messaging for CreativeHub is centered around “equity” – providing equal access to the arts for all types of people from all different backgrounds. They already support artists throughout the city in a number of ways. We were challenged with depicting how the Hub will become the gathering place and collaborative environment for all artists in the city. We started our storyboard with the culmination of the film on a rooftop of the building that needs to be renovated. There is a 360-degree view of the city, looking out from the intersection of so many different cultural districts. We knew that the symbolism of this space combined with artists of different professions, cultures, and ages could be the expression of their mission, and it did just that. The result was a premiere at their inaugural gala that received a standing ovation and initiated a lot of discussions. The canvas you see at the end created by all of the artists working together was part of the auction for their gala.
From the founder
“I feel seen and heard. For the first time I feel like we have something to portray our vision that for so long has just been an idea in my head but has been hard to convey through words alone.”
THE CHALLENGE
For six years, Laura Marotta and Stacy Lord have been actively pursuing their dream to create “an equitable arts program in accessible spaces.” But what does that really mean? Communicating how their vision is more than just a community center for arts has been their biggest challenge. While fundraising for a 15-million dollar capital campaign, investors wanted to know they are doing something unique, which they undoubtedly are, but trying to explain their vision in the context of equity and inclusion was challenging to do when the 36,000 historic building they will be renovating is still in disrepair. Together, we had to come up with a creative strategy to show what it felt like to be part of a program that didn’t exist yet.
CREATING AN EXPERIENCE
Our challenge was taking a complex concept and representing it visually in a way their audience could experience the excitement of their endeavor.The core messaging for CreativeHub is centered around “equity” – providing equal access to the arts for all types of people from all different backgrounds. They already support artists throughout the city in a number of ways. We were challenged with depicting how the Hub will become the gathering place and collaborative environment for all artists in the city. We started our storyboard with the culmination of the film on a rooftop of the building that needs to be renovated. There is a 360-degree view of the city, looking out from the intersection of so many different cultural districts. We knew that the symbolism of this space combined with artists of different professions, cultures, and ages could be the expression of their mission, and it did just that. The result was a premiere at their inaugural gala that received a standing ovation and initiated a lot of discussions. The canvas you see at the end created by all of the artists working together was part of the auction for their gala.
From the founder
“I feel seen and heard. For the first time I feel like we have something to portray our vision that for so long has just been an idea in my head but has been hard to convey through words alone.”
INTERACTIVE STORY GALLERY
We created a series of photos and videos that were on display the night of the event. We had a description and QR code attached to each 16×20 metal print, displayed on easels throughout the hall so attendees could scan the code and watch a short film about the various artists who were featured in their main film. These prints will also be on display when they renovate their new space so they have ongoing value. This was our first time with this innovative approach to storytelling and it was really well received. We learned that tablet kiosks with headphones are really important for the experience of this gallery style.
INTERACTIVE STORY GALLERY
We created a series of photos and videos that were on display the night of the event. We had a description and QR code attached to each 16×20 metal print, displayed on easels throughout the hall so attendees could scan the code and watch a short film about the various artists who were featured in their main film. These prints will also be on display when they renovate their new space so they have ongoing value. This was our first time with this innovative approach to storytelling and it was really well received. We learned that tablet kiosks with headphones are really important for the experience of this gallery style.
#Aubsessed
Aubriella’s Story
A few months ago I got a message from the owner of Oakholm Farm asking if I would create a wedding film…for a 6 year old.
This event looked like a wedding any girl would dream of – a horse and carriage, a unicorn, a lakeside ceremony and of course a beautiful dress – but everything about this moment was not conventional, and the story behind it will take your breath away. What struck me the most about this family’s story is how intentionally they live in the joy of each and every moment together. They soak in the beauty of all the smiles and laughter and love they share with Aubriella, even though day-to-day life has so many challenges. Before I get too far along in sharing their story, the best way for you to truly understand the love of this family is to experience it with them. Please watch their film – #Aubsessed:
To support the Derosier Family visit #Abssessed All Heart on GoFundMe
A Visit with Santa
Every day, Aubriella would FaceTime with Santa. It’s safe to say he is one of her all-time favorite people. So when Santa showed up for the Reveal of their film at our Studio, she was so excited she kept blowing him kisses and even fell asleep in his arms.
A song in remembrance of Aubs
Initially, I was working with singer-songwriter Michaela “Pixie” Mahtani to incorporate a custom written song into #Aubsessed. I had a feeling we didn’t have much time so we decided to assemble the film without it. The song went out to production on the day Aubriella passed away. I used the rough cut to sing at her services and a few weeks ago Rich from R&R Professional Sound donated his time to help me record the final version. This is a compilation of the footage we received from the family and from our time with this precious child who has left an everlasting imprint on our lives.
Life lessons from quarantine
It’s been on my mind and heart to teach the art of Family Filmmaking for a while now. I’m constantly scribbling in notebooks, devising methods of how I can teach the technical skills and perspectives necessary for emotive films, and pulling together drafts of how to teach creatives the business skills necessary to make a sustainable and fulfilling business. But there was one thing that just kept getting in the way: myself.
I kept thinking I wasn’t worthy enough, I wasn’t skilled enough, I just wasn’t enough. How could I teach filmmaking as a business when I struggled so hard through 2020? Well, 2020 was hard for everyone and for an in-home business demonstrating the beauty of life at a time when the world is in crisis and most people are trying to survive each day, the pandemic unmistakably had an enormous impact on my ability to grow as a business. I wasn’t giving myself enough grace because I thought if I just found the one thing that I was doing wrong everything would fall into place. COVID can’t be “fixed” and it is going to take time for our world and the people in it to function well again.
Once I accepted that I am enough and that I have something valuable to offer the world, I still had to figure out how I was going to do that. Often times, people struggle to see the beauty right in front of them because the little details that we want to remember 10 years from now feel mundane and repetitive in the moment. Lifestyle &/or documentary photographers are skilled at spotting these everyday treasures already. They’re my people! They already have the necessary foundations to create family films. If I teach them how to create their own, they can practice with their own families during the remainder of quarantine and then they will be ready to rock and bring this to clients when restrictions lift. I’m only one person who can serve a limited number of families, but if I empower others with the skills and knowledge that I have we can make a much bigger impact together. If there is one thing we have all learned during this time it’s the importance of family. Families will be looking to preserve what their love feels like through film.
Why do I keep coming back to family films? Filmmaking has given me the gift of preserving memories that I want to look back on when my kids are grown and remember all of the little details that my brain doesn’t retain. More importantly, my kids will remember this as a time when we were surrounded by love and connection. I made this film from a mish-mash of scenes I filmed during quarantine (and some before) as a gift to my children, to pass down all of the things that this stage of life has taught me.
If I can help other families preserve their love through films, I NEED to put aside my insecurities and just find a way to do it! I started “Images of Joy” to start the discussion, to reach the people I can share this gift with, and it had to start with the courage to accept myself as I am.
Thank you for everyone who has supported the me over the past few days. It’s given me so much encouragement to keep up the momentum. I know it’s not easy to navigate Apple Podcasts and it stinks that it’s only available on Apple devices. This is just the beginning! It will push out to other podcasting platforms soon. I hope that you are able to join in the journey and preserve your images of joy.
This life isn’t beautiful despite imperfections, but rather, because of them.
A remembrance photo for my angel baby
My Angel | Melody Joy
The profile picture I use on my social accounts is a cropped version of a picture that holds so much meaning for me.
Now I Lay Me Down To Sleep is an organization that provides remembrance photography for families who never get to bring their baby home from the hospital. When I first heard about NILMDTS I knew it was something I had to do. Although I had not experienced a pregnancy loss myself at the time, my photography was a place of healing for me after the loss of my mother-in-law and brother so I wanted to provide that gift to others as well. Emotionally, I could only really handle doing about one every month. While I was in a session I knew I had a job to do so I could hold it together pretty well but when I sat down to edit and relive those moments I was a mess.
About a year into volunteering for NILMDTS, my husband and I were trying to conceive our second child. After seeing so much loss, I was terrified that the same would happen to me. When I was about 8 weeks pregnant, my fears became reality and we lost the baby. I was in complete conflict. At the same time that I was grieving the loss of a child I had never seen or even heard the heartbeat of, I felt like I didn’t have the right to be upset when I had witnessed so many moms lose a baby full-term. Then, when my husband’s work told him to stay home with me for a few days and sent us a bouquet of flowers, I felt like I was given permission to feel everything that I needed to about the loss of this child. My husband helped me create a tangible memory of him or her with a photograph. I plucked a rose out of the bouquet. One side of the photo is to represent the short time I had to soak up the beauty of that precious life growing in my belly, and the reflection was of the intense and very real pain that I let out as I crushed the petals and let them fall to the floor, just as my heart felt shattered into pieces. This picture reminds me that my angel baby will always hold a place in my heart.
This picture reminds me that my angel baby will always hold a place in my heart.
My Angel | Melody Joy
The profile picture I use on my social accounts is a cropped version of a picture that holds so much meaning for me.
Now I Lay Me Down To Sleep is an organization that provides remembrance photography for families who never get to bring their baby home from the hospital. When I first heard about NILMDTS I knew it was something I had to do. Although I had not experienced a pregnancy loss myself at the time, my photography was a place of healing for me after the loss of my mother-in-law and brother so I wanted to provide that gift to others as well. Emotionally, I could only really handle doing about one every month. While I was in a session I knew I had a job to do so I could hold it together pretty well but when I sat down to edit and relive those moments I was a mess.
About a year into volunteering for NILMDTS, my husband and I were trying to conceive our second child. After seeing so much loss, I was terrified that the same would happen to me. When I was about 8 weeks pregnant, my fears became reality and we lost the baby. I was in complete conflict. At the same time that I was grieving the loss of a child I had never seen or even heard the heartbeat of, I felt like I didn’t have the right to be upset when I had witnessed so many moms lose a baby full-term. Then, when my husband’s work told him to stay home with me for a few days and sent us a bouquet of flowers, I felt like I was given permission to feel everything that I needed to about the loss of this child. My husband helped me create a tangible memory of him or her with a photograph. I plucked a rose out of the bouquet. One side of the photo is to represent the short time I had to soak up the beauty of that precious life growing in my belly, and the reflection was of the intense and very real pain that I let out as I crushed the petals and let them fall to the floor, just as my heart felt shattered into pieces. This picture reminds me that my angel baby will always hold a place in my heart.
This picture reminds me that my angel baby will always hold a place in my heart.
I want to give to others what I want most for myself – to relive the most important moments of life. Films are the closest we can come to going back in time.
The best stories have layers
Think of one of the greatest storytellers of all time – Stan Lee. Each Marvel movie has a storyline, within each movie every character has their own story, and all of the movies intersect with the overall story of the Marvel Universe. It’s all about the layers. This structure keeps our attention and pulls our minds into another world using complex stories within stories.
Family films are not about impossible superhuman abilities, but they are similar to Marvel in that they have different levels of meaningful stories. When I create a blog, I usually choose one focal point, but to the family who the film was created for, there are a lot of meaningful pieces that go deeper than the casual observer would understand. This time, we are going to pull out a few of the storylines that were behind the creation of this film.
Story #1:
col·or
a shade of meaning
As a biology major, color fascinated me. Neuroscience can describe how color is received into the brain: specific wavelengths of light are refracted onto the retina where rods and cones send neural signals to the primary visual cortex, with a whole lot more detail in each one of those steps than anyone wants to read in this story. Scientists can even tell you all sorts of research about how colors play into our cognition and memory. My son may have synesthesia, a joining of the senses, in which he associates colors with certain smells. Really, this nerdy stuff is so amazing! But you know the most incredible part of color? It only exists as a perception. It’s not really there and it can be experienced differently by different people.
If a person with total color-blindness can’t see this concept we call color, it doesn’t really exist and therefore doesn’t have meaning…right? With the understanding that philosophical arguments don’t have right or wrong answers, I’m going to do my best to tell you why I think that color has a lot of meaning.
When you strip color away from a film, you also strip away part of the realness of that memory. Artistically this can serve a purpose when you want to draw the viewers attention to a specific item, expression, or dramatically lit scene. I used this technique when I volunteered for Now I Lay Me Down To Sleep, an organization providing the gift of remembrance photos to parents who will never get to bring their baby home from the hospital. All of the images created were in black and white to help the parents focus on the love for their child, and less on the pain and realness of remembering the loss.
In family filmmaking, color plays a crucial role when you want to portray the full depth of a memory. It makes it feel more real, almost tangible. It’s as close to reliving the moment that you can possibly get. Color creates an important link between our memories and emotions. THAT, I would argue, means that color also holds a lot of meaning.
You may be wondering…why oh why did I then make half of a film in black and white? The answer, of course, lies within another story.
The discussion of skin color is a hot topic, and I have found it incredibly difficult to speak up about my thoughts without fear of saying something wrong. At the same time, silence has not felt like the right solution either. The lack of discussion leading up to recent events is the primary reason our culture is in this position right now. The best way I can find to express myself is through my art. I asked this family specifically if they would do a session with a purpose. Their family is made up of different colors, yet the experiences that they have are so relatable to any family. Without color and with color, the film expresses the same love and joy. We can’t change skin color, but what would happen if we changed our perception of its meaning? What if the presence of varied skin tones brought vibrancy to life in the visual esthetic of our uniqueness? What if we saw color as nothing other than a pigment, an ancestry, a beautiful history of people who lived, laughed, and loved? I don’t want to ignore color. I want to embrace it.
Story #2:
A blended family
The stages of life do not have beginnings and endings. They sort of blend into each other, with children growing and changing gradually yet oh so quickly. And when a house has two teenagers remote learning and a 6 year old homeschooled during a pandemic with mom and dad both working full-time, it can begin to feel like it’s just one giant cluster of chaos. Yet even in this time when everything is so unsettled and hectic, there is beauty in the little moments when we slow down and spend time together.
Story #3:
Video games & movies
When I asked Jen in her scriptwriting session what activities were important to their family and she said video games and movies I froze for a second. Previously I had a no technology “rule” for sessions so families could spend time interacting genuinely. This request really challenged me. I knew that leaving out technology, a big part of their family dynamics, would be leaving out a piece of their story. It made me slow down and think about how I could show WHY these things are important. All too often our culture values going going going. This session reminded me to pause. “It’s is a place to slow down and value rest over productivity.”
Story #4:
What is a home?
Jen is one of the best REALTORS I know. Not because she can find you the best houses at the best prices. Many REALTORS can do that. What sets Jen apart from everyone else is the heart she has to help people. She understands that her job is more than about finding a building for her clients to live in. It’s about finding them a place to live, laugh, and love together. “Homes are made up of so much more than wood and nails. They contain personalities, adventures, the colors of life.”
A film to remember my brother
Wing Wing’s Story
We thought about homeschooling our children but were always tentative about whether or not we could actually make it happen. Well, there is nothing quite like covid to give us a kick in the pants to just try it. We started off the year with an exciting activity that my husband and I have not done since we were in elementary school: we cared for a monarch. From caterpillar to chrysalis to butterfly, the kids (and mom and dad) checked on Milky every day. One night her chrysalis turned black and the next morning she emerged. It didn’t even occur to me until halfway through her re-birth day the significance of that date. She spread her wings for the first time on August 31st, a day that we should be celebrating my brother Joe’s birthday but instead we are still processing the grief of his passing 7 years ago.
This film is a tribute to my brother and the loved ones we’ve lost in our family. Joe was the last in our lineage. Although the Felton name will no longer be passed on I will not let it be forgotten. I took a picture of a plate he signed at our wedding and created the “Felton” graphics from his handwriting. He included the railroad tracks because he was a road kid who hopped trains and hitched rides to travel the country with his dog. I soaked in every detail of this butterfly’s beauty, remembering what a gentle and caring soul my brother was and knowing that he is now flying free too.
Now he flies with the butterflies.
