The world is grinding to a halt because of Coronavirus. Except for one thing that continues at the same pace … time. And time is the greatest enemy to children with Sanfilippo Syndrome.
Coronavirus is impacting the Sanfilippo community on a few crucial and intertwined fronts:
1). research/clinical trials;
2). fundraising/financial; and
3). risk of additional illness for children with Sanfilippo.
The significant impact on the first two will undoubtedly delay aggressive progress to find a treatment or cure for this rapidly-degenerative disease, as well as experimental treatments for children. It’s happening already. The third adds increased worry and stress to parents already dealing with the worst imaginable diagnosis for their child.
Some of the ways that Coronavirus is impacting the Sanfilippo community:
- Planned fundraising events in the immediate days are being evaluated to possibly be postponed or cancelled. Just a few days ago, the Abby’s Alliance 5K in Houston, TX, was cancelled.
- Fundraising events in the coming weeks and months are in limbo as organizers wait to see the progress of the virus. Among those up in the air are the Super Eliza 5K in Columbia, SC, coming up in April, and other events in May and June.
- The plan to launch a new viral video campaign in late March, hoping to raise over $1M for Sanfilippo research, has been put on hold because the time is no longer right, based on Coronavirus in the news.
- In-person meetings with donors are being cancelled, postponed, or being conducted via other means.
- Research and clinical trials, including enrollment of the Foundation’s sponsored clinical trial treating children to reduce inflammation in the brain, are being put on hold as facilities restrict access and continued concerns about travel exposure.
- Meetings with regulators, such as the Foundation’s important upcoming meeting with the FDA, are being changed from in-person to virtual settings.
- Research projects to be funded later in 2020 and 2021 being re-evaluated based on ability to bring in the funding needed.
- Staff at institutions working on Sanfilippo, including the Foundation, are navigating the disruptions to their lives, such as state-mandated school closures, and how it impacts their ability to work.
- Children with Sanfilippo Syndrome may be at risk for more severe complications due to conroovirus, particularly those in the more severe stages of Sanfilippo Syndrome.
- One of the characteristics of Sanfilippo is that children tend to put all sorts of things in their mouth including their hands, which makes it more difficult to keep potential viruses away, particularly the younger more active children with Sanfilippo.
- For families who have children that take immunosuppressive medications (ie prednisone, tacrolimus, mycophenolate mofetil, and others), please consult with your doctor about any precautions needed for your individual circumstance. Information is quickly changing, so please keep updated on CDC website, and see helpful resources links below.
Like you, we wait to see how far and long the impact of Coronavirus goes. In the meantime, we will continue doing our best to keep the fight to cure Sanfilippo moving forward as fast as possible. We are also working on short term, and longer term impact strategies.
We believe that this pandemic has given many a new and “all too real” perspective on the stresses that come with worrying if your loved ones will remain healthy. It’s just a glimpse into what Sanfilippo parents face every day after diagnosis. We understand that you and your family’s health are the primary concern, as well as your finances. And these should be as these are two of our primary needs in life, and we are right there with you. We hope we ALL can get back to a “new normal” soon.
Through it all, we are incredibly humbled and genuinely thankful for you. Your support – past, present, and future – means everything to us in the ability to maintain progress against this disease. One of our taglines in the past has been “In It Together.” Well we are all truly “in this together” and we will get through it together.
We wish you and your families safety and health throughout these trying times. We truly appreciate you and thank you.
— Cure Sanfilippo Foundation
Resources
Information on Coronavirus
- Video: Coronavirus & Sanfilippo Syndrome: What Every Parent Should Know
- Video: Scientific Update on Sanfilippo Research, Coronavirus Impact
- Financial Relief: Apply for NORD’s COVID-19 Critical Relief Program (up to $1,000 to support people in the rare disease community with critical, non-medical needs)
- Webinar: NORD on COVID-19 and Families w/ Special Needs
- Center for Disease Control (CDC): Information on Coronavirus & People with Chronic Medical Conditions
- Center for Disease Control (CDC): https://www.cdc.gov/coronavirus/2019-ncov/index.html
- HealthyChildren.org: https://healthychildren.org/English/health-issues/conditions/chest-lungs/Pages/2019-Novel-Coronavirus.aspx
Activities for Kids
Kids are home. Now what to do with them? How to keep them occupied, learning, and physically active is on the minds of parents everywhere as we all practice social distancing. We want to help. Here’s a list of 7 wonderful FREE resources to engage kids during this unprecedented period.
There are many free resources available now in light of the pandemic. Here are just a couple that the O’Neill family enjoyed during their 726 days of isolation experience.
- BrainPOP: https://www.brainpop.com
- Khan Academy: https://www.khanacademy.org/