Sanfilippo Families on TikTok Are Coming Together to Find a Cure
How social media is helping the Sanfilippo community educate and advocate
The rare disease community faces many challenges. Medical costs, caring for an affected family member, and getting them to doctors’ appointments are only a few. The emotional toll the disease takes on the entire family, including extended family, can also be extreme.
Then there is education and advocacy. These are so difficult because they involve reaching the general public and the surrounding community.
My family includes a person with a rare disease. My oldest daughter, Abby, has Sanfilippo syndrome. It is likened to Alzheimer’s disease, but in children, and it occurs in about one in every 70,000 births. The average life expectancy for Sanfilippo children is mid to late teens. Abby is 27 years old, so she has already surpassed this, and we are grateful to still have her.
My husband and I mention Sanfilippo syndrome to every doctor we see, and almost none of them have heard of it. And we live in Houston, Texas, one of the leading medical communities in the nation. We carry cards with us that include Abby’s picture and a snapshot of Sanfilippo syndrome. They are helpful in the event that she becomes noisy or disruptive in public. Instead of a lengthy explanation, we just hand out a card!
My family created a group called Abby’s Alliance, and we host fundraisers throughout the year. Of course, COVID-19 interfered with this, but we are slowly getting involved in hosting events again. Fundraising is important because it addresses the two difficult challenges I mentioned earlier: education and advocacy. These events allow us to educate people about Sanfilippo syndrome and show how it specifically affects Abby. We also advocate for the Sanfilippo community by including pictures of other children with the disease.
Social media plays a huge role in our efforts to educate and advocate for Sanfilippo. TikTok has allowed us to show so many aspects of Abby and how she has been affected by this awful disease. It engages people, and it allows them to ask questions and learn. We have experienced tremendous support and so many positive responses from complete strangers! All are welcome to visit the Abby’s Alliance TikTok.
Several families with Sanfilippo children are doing the same on TikTok. So we’ve all come together to create a fundraiser for the month of September. It is called “TikTok for a Cure,” and our goal is to raise $1 million in one month. Every single dollar raised will go to the Cure Sanfilippo Foundation, a nonprofit organization leading the charge for a cure.
We are very hopeful that the goal will be met or even surpassed. But we are even more hopeful that this fundraiser will spread across the nation and significantly increase awareness. Children with Sanfilippo syndrome will all die from this disease. There is currently no cure or treatment available. This must change. For children today and in the future.
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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