It’s hard to believe that the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted the lives of so many people in myriad ways. One specific way it affects the rare disease community is that many fundraisers have been canceled for understandable reasons, hampering efforts to spread awareness and raise money.
Many families with 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 untreatable diseases. They are very vital for many reasons.
My husband and daughter Emily and I have 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 written previously about the fundraising effort.
Fundraising is beneficial to all involved, including those diagnosed with a disease, participants, the families hosting them and their helpers, and the organizations receiving funds. The most obvious benefit of fundraising is the money raised. However, they also provide many other positive effects.
Hosting a fundraising campaign requires a lot of behind-the-scenes work and planning, although for my family these efforts provided us with a sense of purpose. It is tangible to feel that we are contributing to finding a cure and raising awareness about Sanfilippo Syndrome. We often feel helpless as we watch Abby deteriorate.
We spend our days working and interacting with others so we have our transfers, but when we come home with Abby and witness her deteriorate, it’s incredibly frustrating. Planning and working out all the details related to fundraising is helpful. It gives us something to actually do instead of watching helplessly on the sidelines.
Fundraisers strengthen bonds between families who share similar diagnoses. They allow friends and extended family members to show their support and learn more about rare diseases. It provides opportunities for people from all walks of life to come together and unite for one purpose.
COVID-19 has halted many of these events. So, we have to be creative and improvise. We decided to create a TikTok account for Abby’s Alliance. It’s new, so there isn’t a lot of content yet, and we’re still learning to navigate the app. But we think it’s perfect for spreading awareness, because we can post videos of my dad and put a face to Sanfilippo Syndrome.
Many other families have TikTok accounts for their children as well. It is very helpful to see these children in their daily lives. We hope our channel will be a useful and meaningful way to share Abby’s story. Our goal is to continue spreading awareness of this disease and educating others about Sanfilippo Syndrome.
Noticeable: SanFilippo News It is a news and information site about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare 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 opinions SanFilippo News Or its parent company, BioNews, aims to spark discussion about issues related to Sanfilippo Syndrome.