Project Scleroderma | Moving Forward
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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.

Christy
rachel@missmerkledesign.com
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