Project Scleroderma | PS Updates
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The Voice of a Scleroderma Patient

Hello everyone! It has been a while since I have shared a blog post with you all, please forgive my absence, but I have a good excuse! On September 14, 2013, my husband and I welcomed our first child, a baby boy, Shane Patrick.  We could not possibly be happier than we have been in the last 5 months since he has arrived. He is such a joy and blessing!

In the time since I last posted to this blog much has also been happening behind the scenes with our documentary film, Project Scleroderma: Beneath The Surface. Our team is working on final edits for our film festival entries of the documentary. The film will be entered into many different festivals throughout the U.S. and possibly abroad as well in 2014. Once the festival entries are complete we will then be able to make the film available for purchase. We thank you all for your patience and we promise you will eventually have the opportunity to view/purchase the film!

Aside from the film, my mission to raise awareness in other ways though Project Scleroderma continues as well. It is my on-going mission to help share the message of awareness for and with all Scleroderma patients as they continue to battle the daily obstacles of this frustrating disease. Just last week, there was one patient in particular whose voice rang clear and strong as a call to action, and which moved me to share her words with you. On February 28th, Rare Disease Day, Kelly Ellison shared with her Facebook followers, in part, the following:

“Scleroderma is a horrible complicated disease for which there is no known cause and there is no cure. There is still a need for global awareness as many succumb to the fight daily, mostly women. Imagine so much hardening and scarring around your lungs that you have to fight for every breath as you try to walk up a flight of stairs or even to the next room. Imagine trying to eat and enjoy your favorite meal, but you can’t because of the hardening in your digestive tract has caused your esophagus to close to the point where food gets stuck or there is no wave motion so food only goes down because of gravity and won’t stay down because the flap at the bottom doesn’t close which leads to regurgitation or constant vomiting. Imagine the skin being so tight on your hands that your fingers become claw like; you can’t extend them or make a fist which prevents you from holding a toothbrush, pumping gas, sliding your debit card in the ATM for cash, combing your or your child’s hair, opening a bottle of water, and the list goes on. Imagine the skin all over your body being so hard and tight that you can’t bend or stoop to pick up your keys because you dropped them in the middle of the post office, get in and out of the tub without assistance, put on your own socks, bra or underwear, drive, lift your hands above your head or behind your back, your face is so tight that you can’t open your mouth wide enough to bit a burger, banana or popsicle or even brush your teeth in the back. Imagine constant pain in ALL of your joints. Now that you have done this…welcome to my daily life and the lives of hundreds of thousands of women, men and children. Wow, right……….right!”

Now let me tell you, I have come to know Kelly well in the past year (as her story with Scleroderma is one that we highlighted in our film), and this is in no way her asking for our pity. Rather, she is asking us all to take a moment to try and understand just how complicated and disruptive this disease can be on any given day for Scleroderma patients as they attempt to go about a “normal” day. Kelly’s words make it clear as to why it is so important to help spread awareness and support organizations like the one she started herself, four years ago.

The Relief Foundation is a non-profit organization founded by Kelly Ellison out of a need to provide access to information, resources and assistance to significantly improve the quality of life for individuals living with Scleroderma.  The Relief Foundation’s mission is to provide assistance with the practical, physical and emotional challenges faced by individuals living with Scleroderma through empowerment and education. These efforts include hosting informational workshops, group and one-on-one support meetings, fundraising events, scholarships for attendance at national conferences and forums for patients living with Scleroderma.

The work that Kelly is doing is powerful, and even more so because she is doing it all while fighting her own battle against this rare disease. In closing her Facebook post Kelly asks her friends and followers, “Please help spread awareness today and moving forward by telling someone about me, sending them to The Relief Foundation website at http://www.relief-foundation.org helping support a patient and their family by making a donation.”

I ask you all to take a moment to check out her website and if you can to also help support her organization and their mission. Thank you!

 

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Overcoming the Obstacles

Andrea Matis is a Scleroderma patient from Southern California who has been living with the disease for the past 30 years. Andrea’s diagnosis, like many other Scleroderma patients, began with little knowledge of the disease and with that a great fear of the unknown as well. Andrea says, “ I was simply horrified. I, and no one I knew, knew what this disease was and all the brochures and info we received showed horrible disfiguring and stats on surviving.” Andrea was a professional dancer at the time of her diagnosis; she had recently married her husband Scott and says they were “ready to live a full life together.” Despite her fears, Andrea went to a friends medical library and read everything she could find concerning Scleroderma and then decided to “fight, fight, fight”.

The next 3 years were spent in and out of hospitals for testing and treatments. Andrea explains her initial struggle with accepting the physical and emotional changes that were occurring for her during this time period, “I had huge issues with the face and hand disfiguration, the weakness and constant exhaustion. Soon I was unable to do anything in the kitchen, my hands covered in painful ulcerations. I had to go to therapy to accept the fact that Velcro jeans and sneakers were my fashion statement. It was a struggle to accept what was going on in my body.”

As time passed both Andrea and her husband were slowly able to adjust to their new norm, with Scott taking on all of the cooking and household responsibilities full time. However, the future they had once imagined for themselves now seemed to look entirely different. Having children was something both Andrea and Scott had always dreamed of, yet with Andrea’s limitations and health concerns it soon became clear that having their own child may not be possible. After strict advisement from their doctor to not get pregnant at this point, Andrea and Scott decided to go the route of adoption.

Although Andrea worried that no one would see someone such as herself, with a disability, as a fit choice to adopt a child, she and Scott pressed on until one day the agency called to notify the couple that there was a woman interested in meeting with them. Andrea explains the first day they met Katherine, the woman they would go on to form a beautiful and lasting relationship with, as one of the most memorable and powerful moments in her life. “The day we met Katherine was the most exciting and scary day of my life. Just her deciding to meet us was such a huge event in my life as I had been ill for several years and thought of myself as anyone’s least favorite candidate. We were very apprehensive. I simply could not believe she had chosen to meet us.  I said as much, and she said it was because of everything we went through with my illness that she knew we were strong people and could handle the open adoption that she wanted. She was beautiful and spiritual, kind and open and we felt like long lost friends immediately. She made me feel like everything I had been through in the past few years lead up to this very moment, that we were chosen to have a family with her.”

In January of 1987 Katherine gave birth to Andrea and Scott’s first child, a son named Bruce. When Bruce was 2 years old, Andrea’s doctor gave her permission to try to get pregnant herself.  With the help of fertility treatments Andrea did indeed get pregnant and went on to give birth to their daughter, Blaine, the following year. And 19 months later another baby girl, Brooke, was added to the growing Matis family.  Of raising the three children Andrea says, “As they grew, I got them involved in dozens of activities and I became involved as well, helping teams, drama productions etc. Aside from my hands, which were slightly surgically corrected between Bruce and Blaine, no one thought any different of me as a mom.”

Sadly, nine years after Andrea was diagnosed, her sister in law Gale was coincidentally also diagnosed with Scleroderma. Andrea says,  “ (Gale) suffered immensely for five years from seizures, tissue hardening and dialysis and spent over 200 days each year of her last two years on earth hospitalized. She decided she could not live that life anymore and told her doctors to take her off dialysis when she was 54 years old.” With such a huge personal loss from a disease that was already so close to home, Andrea and Scott were devastated to say the least. “(Gale) had been there for me, had helped with fundraisers and keeping me company at my worst. In less than 5 years she was gone.”

With numerous personal reasons to champion for this cause, Andrea shares her story of diagnosis, adoption struggles and triumphs, and loss as a result of this horrific disease in her book “Serenaid”. This book offers a vivid display of the sometimes surprising and tumultuous path that life can lead us down. Yet it also reminds us that this path is worth taking no matter how difficult it may be, because there are incredible gifts of beauty and love to be found along the way.

Proceeds from Andrea’s book sales go directly towards The Scleroderma Research Foundation and their mission to support the doctors and researchers who are working hard every day to find a cure.

Andrea’s passion for this cause is deeply evident in her words of hope for the future of this disease, “Every day I wish that Scleroderma would be eliminated off the face of the earth. I also wish that in the meantime it would become a household word like Cancer or Parkinson’s as it is just as horrid, but no one knows what it is.  Scleroderma is a horrific disease that takes the lives of people, mainly women, when they are young and in the prime of their life. It has to be stopped!”

To purchase Andrea Matis’ book, “Serenaid” go to http://Www.srfcure.org/get-involved/store

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Nearing the Finish

It is amazing to see the progress that has been made thus far in the “Project Scleroderma: Beneath The Surface” journey. As we are close to sharing our documentary film with the world, it feels as though a new and exciting beginning is on the horizon. Project Scleroderma’s mission all along has been to spread awareness of this disease as far as we possibly can, and with this film we now have a powerful visual tool which will greatly help us to achieve our ultimate goal of global awareness going forward.

Almost two years ago I set out to find a way to dramatically and effectively change the level of awareness of Scleroderma. As those who have followed this project from the beginning already know, I lost my mom to this terrible disease in a very quick period of time. My family and I were left confused as to what it was that so swiftly took our mom from us.

As I set out to learn more about the disease, I joined a support group online for patients as well as family members who have lost a Scleroderma patient. The interaction I had with the patients on this site was not only informative but incredibly inspiring as well. I learned more about the different types of Scleroderma that exist and the myriad of symptoms and obstacles that come along with each diagnosis. I learned how frustrating it could be to have a disease with so many side effects that are similar to other diseases or conditions, thus making it difficult to diagnose. In many cases patients are led through an obstacle course of doctors and misdiagnosis before they arrive at the conclusion of Scleroderma. And typically by this point damage has been done that is irreversible. If patients are able to receive the correct diagnosis and care early on, the doctors then have a better chance of stopping the disease from progressing.

This of course was all news to me as my mom was diagnosed in April and passed away by September of that same year.  Although my mom did not endure a similar course, I can truly empathize with the frustration these patients have over how little is known about this disease. Not only does the majority of the general public not know about this disease, many doctors know little about this disease as well, and honestly if I were a patient that would be the scariest truth of all to me.

As I have journeyed through the process of making this documentary film, I have learned more and more of the daily struggles that each Scleroderma patient faces, and just how unique each patient’s diagnosis is. From the beginning, I was aware that my passion for this cause was inspired by my desire to heal the loss of my mom, but I also quickly learned that the deeper calling for me was to help these wonderful people I have met along the way to be heard and to help them find hope as they battle this disease.

One by one, each patient over the past two years has touched my heart in a different and special way. Their willingness to share with me and all that they have taught me has ignited in me a sincere and lasting dedication to this cause. As I go forward with Project Scleroderma, even beyond the making of this film, I am committed to continue to help raise awareness for Scleroderma in hopes that one day we will all see a cure for this terrible disease.

You may not know someone personally who has Scleroderma, but the truth is, this disease affects all genders and ethnicities and it could very easily one day affect someone you know or care about. As we begin the next phase of this project, sharing this film as far as it can reach, my greatest hope is that it will inspire people all over the world to recognize the struggle that these patients are facing and encourage them to help support the research that is desperately needed to find a cure.

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Catching Up with Project Scleroderma

In the beginning, all Christy knew was that she wanted to do something to raise awareness of Scleroderma. But, exactly what – she had no idea. A new and creative approach was of great importance along with as immediate an impact as possible. The answer didn’t come from writing down a list of ideas or scouring the Internet for research on charity campaigns. It came from her living her everyday life.

Around that time, Christy had taken an interest in watching documentaries on a number of different topics. “What I found in watching this style of film,” she says, “is that the way in which documentary stories are pieced together, so raw and honest, connects the viewer to a desire to want to understand more deeply – whatever the content of the film.” And, from here, her vision began to unfold.

“I could see patients telling their stories, sharing their hopes and fears, giving the audience an honest view into their lives with Scleroderma; and, thus, inspiring the viewer to [learn to] understand the disease more clearly.” She envisioned doctors explaining information about the disease and the need for further research. And, she also envisioned a truly personal connection in sharing her story about losing her Mom to the disease. “My vision was to speak to the viewer in a real and honest way and to share the universal truths of life: loss, love, pain, struggle, hope, inspiration…we are a part of it all, the good and the bad.”

When Christy approached JC with her idea, he was glad to help his longtime friend, but wanted to make sure that she knew what the process was going to entail. He told her that they were first going to have to raise funds to get the project up and running and that she should expect the process to take a long time. “I warned Christy that it could end up being a few years to get through,” he says, “I thought it could be shorter, but I wanted to prep her for that.”

JC’s business partner, Bill, agreed that this was an important project for them to get involved in. The pairs’ previous experience with documentary filmmaking was working with a music band to tell the story of how they formed and progressed from there. Project Scleroderma would be much different. “This was much more a documentary about making a documentary,” says JC. “This was a journey we were watching unfold as we went along, so we had no idea what to expect.” Bill feels the same way. “[This time] we were helping form the story – beginning to end – whereas, in the past, some of those components had already been in place.”

As the project began, all three members of the team had vague ideas about what to expect, but all felt, for the most part, like they were heading for the unknown. They wanted to make an impact, to be successful in bringing about more awareness of Scleroderma, but weren’t sure just how far their project could reach. One of the first necessities was fundraising. And, from that early stage, a very promising future was revealed.

During the Indiegogo.com fundraising campaign, the message of support was spread across all social media outlets by patients, family, friends and even complete strangers around the world. Patients also inundated the team with expressions of immeasurable gratitude. “It was beautiful to watch,” says Christy. “It was then that it became clear to me that even if we didn’t reach our goal of $30,000, we had already made a difference. And, if we could reach $30,000 and continue on with the production of this film, that the impact we could make for this disease had the potential to be far greater than I ever could have imagined.”

JC admits that he truly had no idea what to expect from this experience. He also cites the fundraising experience as a real moment of realization. But, of even more significance was when the Scleroderma Research Foundation and Bob Saget joined the project. “My first conference call with Bob and Charles Spaulding was pretty surreal,” says JC. During this conversation, Spaulding talked about the abundance of requests they regularly receive for similar partnerships and explained that Project Scleroderma was the first they were teaming up with. “They took note of what we were doing and were compelled enough to partner with us,” says JC. “That to me blew my expectations away.”

While JC warned Christy in the beginning about the money and time that would be involved in moving forward with the process, she also explained to him and Bill that there would be emotional aspects they should be prepared for. She told them that they would become significantly invested in these patients and their struggles. “That one-hundred percent happened over time,” says JC. “Initially we were just helping a friend with a cause she believed in,” explains Bill, “but it has evolved into much more. I am forever connected to Scleroderma now…I feel like this is something I have to do now and not just something I want to do.”

One particularly memorable experience for Bill occurred while conducting interviews of patients at the Johns Hopkins Hospital. “We were using a lav mic that clips onto the collar of the subject’s shirt to record some of the audio. When we were finished with one patient, I asked him to unclip the mic himself. He was unable to do this because of the condition of his hands…it opened my eyes to the little things these patients had to deal with on a day-to-day basis. These are things you don’t initially realize because they might not show outward signs of being sick.”

It’s moments like these that contribute to the unavoidable reality that becoming so invested in a cause like Scleroderma awareness and going through the process of documenting the lives of so many people affected by disease can’t happen without also enduring much emotional upheaval. The concept of filmmaking may have a certain veneer of romance, but the reality for these three is that they are spending vast amounts of time immersed in a world that is full of pain, struggle and heartbreak. They are people just like the rest of us – only human. And, to avoid any type of emotional breakdown would seem impossible.

Just a few weeks ago, Christy had a moment during filming where her emotional tolerance reached its limit. She talked about just how hard the process was for her – for all of them. Both JC and Bill were glad that she was able to express these honest feelings in this way because it showed the viewer the raw truth about all sides of their experience – the same elements that had initially drawn Christy to the idea of creating a documentary. JC also discusses how emotionally difficult it is to have a main subject of the film who is also such a close friend. “You want to get the best footage,” he says, “but walk a tight rope of wanting to stop the camera and console your friend.”

Although it has been difficult at times, the team has endured and made amazing strides. They have reached a stage in their journey where the visions in their minds will soon be viewed by so many around the world. After gathering the final footage needed, they will start to weave all of the many story threads together to create a powerful representation of the Scleroderma reality. They plan to enter the film into festivals, as well as to have it shown on the Internet and television, so that it can bring about more global awareness. “It is this piece of the plan that I feel will be most impactful,” says Christy. “The more audiences we can expose to Scleroderma [awareness], the better chance we have of fulfilling our true mission.”

Christy’s dream for the impact the film has on the world does not end with those connected to Scleroderma, either. “My hope is that this project can inspire others to focus more on making changes and taking positive action as opposed to being swallowed up by the fear that tells us we are helpless and can’t do anything to change the fact that disease, in general, exists.”

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Moving Forward

The Project Scleroderma team’s recent trip to Baltimore has left us more enthused than ever about the progress, purpose and direction of our project as well as our collaboration with the Scleroderma Research Foundation.

On August 15th we met for the first time with the SRF’s Vice President of Communications, Charles Spaulding, who has been our principle contact at the foundation since the beginning of our journey. He has also been the most instrumental component in our collaboration with the SRF. We were thrilled to meet with Charles to kick off our joint effort of producing this film, as well as incredibly grateful for the interviews he had lined up for us in the two days to follow.

At around 5 a.m. on August 16th, we headed out of Philadelphia en route to The Johns Hopkins Scleroderma Center in Baltimore, where we would meet Charles for set up on our first round of interviews. Our energy was high, as this trip marked yet another major step in our journey.  As we left town I couldn’t help but think back on our high-pressure 35-day fundraiser in early 2012. I was reminded that the force behind our efforts for that campaign was largely driven by our hope for opportunities like this.

Upon our arrival at Johns Hopkins Scleroderma Center, we first interviewed Dr. Laura Hummers, Assistant Professor of Medicine and Co-Director of the Scleroderma Center at Johns Hopkins University School of Medicine. Dr. Hummers was able to give us a better understanding of how many patients their center sees on a weekly basis as well as an insight into how significantly their practice has grown in the past 11 years in large part as a result of support from the SRF.

We then went on to interview 5 patients who are currently being treated by the team at Johns Hopkins Scleroderma Center. The patients kindly opened up to tell us about their daily struggles with the disease. Each patient’s story highlighted the vast complexity and varying symptoms and diagnoses of scleroderma. Our team was grateful to have such well-spoken and open participants for our interviews and could not have been happier with how well our first day of filming went.

The following day gave way to our most compelling interview of the trip – that with Dr. Fredrick Wigley, Director and Co-Founder of the Scleroderma Center at Johns Hopkins, and one of the most world-renowned physician scientists in scleroderma research. Dr. Wigley sat down with us for a generous, hour-long interview. It was conducted by Charles and was especially heartfelt, educational and inspiring. I learned more about scleroderma in that one hour than I have over the past 3 years since my mom passed away. Dr. Wigley thoroughly and articulately explained the complexity of this disease and the critical need to support the work these brilliant researchers are conducting.

As I listened to Dr. Wigley speak about their research, it became clear to me that this man is not only incredibly passionate about the work he is doing and the advancements they are making concerning this disease, but he is also heavily invested in the wellbeing of his patients both physically and emotionally.

I left his office feeling more inspired than ever to help rally support for this cause. Dr. Wigley spoke of his confidence in the research currently being done for scleroderma and the progressive track they are on to find a cure. The most significant point emphasized in his interview, however, was that they desperately need support and funding in order to continue down this path of advancements.

Project Scleroderma’s dual purpose is to raise awareness for this disease as well as to support scleroderma research. This trip to Baltimore reinforced our belief in the purpose of our mission and provided even more encouragement to continue working with the greatest level of effort possible to change the extent of support for research on this disease. We were able to see, firsthand, how the funding provided by the Scleroderma Research Foundation directly and significantly benefits the research being performed and, therefore, feel certain that the SRF is the best choice for our organization and its donors to support.

We are grateful to everyone who was involved in facilitating a successful two-day shoot in Baltimore, and we look forward to and are hopeful about what the future holds – not only in regards to our film, but also the impact our mission will have on the level of support for research funding.

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The First Year of Project Scleroderma

Just one year ago, three people sat down for a casual discussion about creating a documentary for the purpose of raising awareness for a disease even they knew little about. Although knowing this would certainly be a time-consuming and difficult task, they were up for the challenge. Little did they know then that their vision would inspire a global call to action.

This was our team and it is amazing to see the progress that has taken place because of this grassroots mission in such a short period of time. Personally, I can say that this project was very daunting in the beginning, most especially because I had no idea what I was doing or getting myself into. But, it’s amazing how passion and creativity work. A person may know very little about how to act on this passion, but it is the driving force behind figuring things out along the way. I learned this as I journeyed down the path to understanding what it takes to make a dream possible and, now, the team and I are living the vision we set out to achieve.

In June 2011, JC Costa, Bill Connell and I sat on the couch in my living room brainstorming about our aspirations for this project. After our discussion we decided that, in order for this film to be effective, it was imperative we partner with a larger organization involved in the cause, come up with a plan to raise funds in a new and innovative way, and create a community of supporters for the project.

Flash forward to June 2012. We just completed a 35-day online fundraising campaign, which raised $30,000. We created a global network of patients and supporters, all rallying to accomplish one common goal – awareness and support for scleroderma research. We were also able to achieve the extremely important objective of gaining the attention and respect of the Scleroderma Research Foundation.

Today, our journey continues. And, we are so grateful to every single one of you who contributed to our fundraising campaign and who continue to support us as we move forward in our efforts to create change and everlasting awareness of scleroderma. This would be a far more difficult process for us if we did not have your love and support. Thank you!

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Social Media Impact

I think we can all agree that social media has greatly impacted the ways in which we interact with each other on a daily basis. As the prevalence of this new phenomenon in communication continues to rise, it is becoming increasingly more apparent that social media tools can be used in powerfully positive ways.

This concept is certainly not lost on our Project Scleroderma team. We are excited to be a part of this next wave of technology and are eager to take advantage of a new vehicle to raise awareness. When we reached out to patients on Facebook and Twitter it became evident that our grassroots project suddenly had the potential for a much farther reach than we had initially anticipated. Patients from all over the world began to email us and share their stories about living with Scleroderma. If I am being honest, I was initially a bit overwhelmed and surprised by the responses we were getting. I had no idea that this was a global issue. Being that I had never heard of the disease when my mom was diagnosed, I could not imagine that a disease so seemingly under-the-radar was affecting this many people all over the world. To me this knowledge was all the more reason to get behind this cause and try to make a difference.

Although not able to travel to the countries where these patient’s live, we knew there had to be a way to allow the global patients to share their stories in our film. My partners in this project, New Pace Productions, came up with the idea to send a small video camera around the world, which will allow the participants to record their own piece of the story. This is yet another great example of the powerful impact technology has on our ability to communicate with each other. Without social media this layer of the story could possibly have not been told. These particular patients would have no idea about our project and, likewise, we would have no idea that they were out there ready and willing to share in our passion for awareness. It’s a beautiful thing really.

A great example of how social media has created a new avenue for fundraising is the “Zamboanga Funds for Little Kids”. An online article from USA Today posted in May of 2011 reads:

Jay Jaboneta attended a blogging summit in Zamboagna City, Phillippines. While at the summit, Jaboneta heard a story about a group of children who were swimming a half a mile each day just to attend school. The story moved him so much that he posted an update on his Facebook wall that night. Almost immediately, one of his friends started an online fundraising campaign among friends, and in less than a week, the “Zamboagna Fund for Little Kids” campaign had raised $1,614.39.

Stories such as this are becoming more and more common; so common that sites such as Indiegogo.com were created. Indiegogo.com is a site that serves as a platform to help support creative fundraising campaigns just like ours. Even though $30,000 in 35 days may seem like a far stretch, our team is confident that this social media approach will allow us to connect with enough supporters who will help us reach the necessary tipping point required to fund the documentary. We are so grateful for the support we have received thus far from all of our online followers and we know that without these social media outlets our goal would be far more difficult to achieve. Thank you to each and every person who has supported this project in the past few months. This is just the beginning of an exciting new approach to awareness and we are happy to have you along for the ride!

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