Information, support, and resources regarding the more than 7,000 rare diseases in the world, which includes Sanfilippo Syndrome, can be scarce. Cure Sanfilippo Foundation has expanded its website to help fill the gap of information about Sanfilippo Syndrome for families and caregivers of children with the disease, physicians and clinicians, researchers, and people looking to support the fight to find a cure.
Upgraded a Step At a Time
Over the past six months, the Foundation has been making steps to expand and improve its website for visitors.
A more sophisticated donation experience was turned on in August 2019. This provided donors with an easier checkout process and ability to track lifetime donations.
The Foundation’s online store of branded apparel and accessories debuted in fall 2019. Partner families have the ability to have individual boutiques with their own identities and branding. Proceeds from the online store benefit the Foundation’s mission.
In late 2019, the Foundation moved to an updated domain, CureSanfilippoFoundation.org.
The Biggest and Most-Notable Changes
The most dramatic update came May 2020 as the visual look of the site was overhauled and content extensively expanded.
As it always has, the families of children with Sanfilippo Syndrome remain front and center of the Foundation’s website. More than 80 families (and growing) tell their powerful individual stories in the “Meet The Families” section of the website.
Also a well-known feature of the website is extensive information about the disease.
New to the website:
- More options for how people can support the Foundation. People interested in supporting the Foundation can help by donating, fundraising, donating their birthdays, corporate matching, and even by simply shopping.
- Creation of a repository of resources for caregivers in managing the multiple aspects of caring for a child with Sanfilippo Syndrome. Much of this content is connecting families and caregivers with exceptional resources elsewhere, such as the Courageous Parents Network and B.L.A.I.R. Connection.
- A growing collection of resources for the Foundation’s partner families, including individual informational sheets and fundraising support.
- A section specifically for physicians to brief them on a disease they have probably never encountered personally and clear information about testing options for Sanfilippo Syndrome.
- A section for researchers that lists resources relevant to investigating Sanfilippo Syndrome.
- A list of current clinical trials regarding Sanfilippo Syndrome so families, physicians, and researchers can find opportunities.
The Foundation will continue adding further content in collaboration with its scientific team, comprised of Chief Science Officer Cara O’Neill, MD, FAAP, and the Foundation’s Scientific Advisory Committee.
The website continues to list all the scientific and thought-leadership projects supported and/or led by the Foundation, thanks to the generous support of its donors.
“To best support and represent the families fighting Sanfilippo Syndrome — their story and this fight, it was time to take the Foundation’s website to the next level,” said VP of Marketing Katie Walton. “Additionally, the Foundation believes the website is a way to support and empower physicians, researchers, and supporters, all of whom are the key to finding a cure for Sanfilippo Syndrome.”