Why I Decided to Start a Foundation for My Rare Disease
Living with my condition short bowel syndrome (SBS) has affected my life in many different ways over the years — physically, emotionally and socially. They all have their positives and their negatives. These experiences – both positive and negative – were the driving force in establishing the Short Bowel Syndrome Foundation. Primarily, because I have an understanding of the core issues related to SBS – the need for education, support and advocacy in our community of patients and providers. The idea was to start a small, local organization and grow, but really the reverse happened in such a short amount of time. We started gaining a large following and interest in the condition. Unlike my family, who had to rely on limited knowledge of our healthcare providers, many of my supporters are experiencing the “infancy and toddler” years of SBS and receiving much needed peer support as well and help from the medical community.
Finding information about SBS when I wasn’t in a hospital proved challenging. And finding accurate information was even more daunting. In 2010, I was invited to join a small online support group for SBS. It started as a group of about 50-75 parents of SBS infants, toddlers and small children, looking to find someone more experienced in the lifestyle of the condition. I received masses of questions and it was clear to me that more support was needed. Thus, I started the Short Bowel Syndrome Foundation on December 3, 2010.
We preserve a patient-first mentality in all of our work, which is shared throughout our team. While respect and diversity are inherent in everything we do, we understand that collaboration and partnership with other advocates, researchers, regulatory agencies and industry, are critical to the long-term success of the foundation. The internet and social media networks have been instrumental in connecting us to other patients, caregivers, healthcare providers and other industry-based organizations. Our website serves as the main “hub” for the short bowel community to go to for the latest updates on SBS, educational material, to contact someone from the foundation via phone or email, read patient stories, tap into valuable resources to improve quality of life and more. All social media sites and support groups can be accessed through the site. More importantly, we are active on these platforms because this is where the community is active.
The SBS Foundation has a significant Facebook presence through a non-profit business page. In less than five years, it has amassed more than 10,000 followers. Our main Facebook page is where we post news stories, make announcements, share industry events and patient stories, and even announce our financial giving awards and growth. The Facebook online support groups are a little more personal in nature. They are made up of patients and caregivers and each has its own private group. The larger group of 800+ is for pediatric SBS patients and caregivers, and it is mostly parents discussing their child’s care.
Our mission aligns closely to the goals of many of our industry partners, at the heart of which, is patient advocacy. Some other similarities include support services for patients and caregivers, as well as educational resources. All in all, we are in favor of innovation that brings about new and improved treatment options, because more likely than not, these advances can improve the quality of daily life for SBS patients like me.
In the rare disease industry, patients are scarce and difficult to find. So organizations like my own are an avenue into the patient world. We serve as a conduit to the SBS community and some of the stakeholders industry wants to reach. We want to be heard and are willing to tell our stories. Patients in the rare disease community have found their voice and know their bodies best. It can be a very lonely and isolating life living with Short Bowel Syndrome, but the support that we find along the way can be
very empowering. To some, it creates an additional, much needed lifeline of hope to look forward to in their future.
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