Spreading Awareness on Social Media During the Pandemic

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by Kelly Wallis |

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It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives in myriad ways. One specific way it affects the rare disease community is that many fundraisers have understandably had to be canceled, hindering efforts to spread awareness and raise money.

Many families who have children or loved ones with rare diseases host fundraisers and other events throughout the year to raise awareness and funds for research and clinical trials for diseases that don’t yet have a cure. They are so vital for many reasons.

My husband, daughter Emily, and I created a community of family and friends to raise awareness called “Abby’s Alliance.” We’ve hosted a few fundraisers for Sanfilippo syndrome, the disease that afflicts our daughter Abby, and I’ve previously written about our fundraising efforts.

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Fundraisers are beneficial for everyone involved, including those diagnosed with a disease, the participants, the families who host them and their helpers, and the organizations who receive the funds. The most obvious benefit from a fundraiser is the money raised. However, they also provide many other positive effects.

Hosting a fundraiser requires lots of work and planning behind the scenes, although for my family, those efforts provided us a sense of purpose. It’s something tangible to do to feel like we are contributing to finding a cure and raising awareness about Sanfilippo syndrome. We often feel helpless as we watch Abby deteriorate.

We go about our days at work and interacting with others so that we have our diversions, but when we are home with Abby and witness her decline, it is incredibly disheartening. Planning and working on all the details involved in a fundraiser is helpful. It gives us something to actually do instead of helplessly watching on the sidelines.

Fundraisers foster connections between families that share similar diagnoses. They allow friends and extended family members to show their support and learn more about rare diseases. And they afford opportunities for people of all walks of life to gather and unite for a single purpose.

COVID-19 has put a halt to many of these events. So, we have to get creative and improvise. We decided to create a TikTok account for Abby’s Alliance. It’s new, so there isn’t much content yet, and we’re still learning to navigate the app. But we believe it’s ideal for spreading awareness, because we can post videos of Abby and put a face to Sanfilippo syndrome.

Many other families have TikTok accounts for their children, too. It’s so enlightening to see these children in their daily lives. We hope our channel will be a helpful, meaningful way to share Abby’s story. Our goal is to continue spreading awareness of this disease and educate others about Sanfilippo syndrome.


Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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