At Smith-Kingsmore Syndrome Foundation (SKSF) we believe passionately in our mission to support cutting-edge research and worldwide awareness. Our responsibility is to ensure we make the best use of the funds we receive. We are committed to transparency and making it easy to access information on how we are carrying out our mission. Here you will find a few of our accomplishments, our filed tax returns and a summary of our financials. Thank you for your continued support!
Where We Are 2022
This year, Smith-Kingsmore Syndrome Foundation (SKSF) has funded a 3rd year of Smith-Kingsmore syndrome (SKS) foundational research at the University of Florida in Dr. Liu’s research lab, bringing our total investment in this work to $178,485. This initial 3-year SKSF investment will spark larger research funding.
SKSF collaborated with our Medical & Scientific Advisory (MSA) to produce the SKS Report for NORD’s Rare Disease Database and patient information brochure, providing critical information for both medical professionals and family members in the SKS community. In addition, SKS increased engagement through campaigns for Awareness Day and Rare Disease Day, connecting medical experts with families, and collaborating with other rare disease advocacy organizations.
Funding SKS Research
- Awarded 3 research grants totaling $178,485 to fund a postdoc researcher at the University of Florida for 3 years
Fundraising Initiatives & Promotions
- Launched Awareness Day and Rare Disease Day Workout of the Day (WOD) Virtual Fundraisers
- Received Blue Signal Gives Back 2019 AND 2020 charity donations
- Participating in AmazonSmile – select our organization and Amazon will donate 0.5% of your purchases
- Selling SKS T-shirts to raise awareness – available now!
THANK YOU FOR YOUR SUPPORT!!
Family Outreach & Global Awareness
- Connecting families from around the world with SKS specialists
- Supported family conference October, 2019 & 2021- featured in Cincinnati Children’s blog
- Updating website to provide latest research materials to help families and medical professionals
- Shared and promoted SKS family stories across social media platforms for Rare Disease Day 2020, 2021 & 2022
- Launched #SunnyWorldofHope campaign showing photos of children with SKS thriving during social distancing
- Producing Live at 5 Facebook interviews with experts providing information to support families
- Organized events for our SKS Awareness Day, August 15, 2020, 2021 & 2022
Organization Networking
- Participating in newborn screening workshop with related genetic advocacy organizations
- Joined Global Genes RARE Foundation Alliance
- Approved as a Platinum member of the National Organization for Rare Disorders (NORD)
Building Avenues For Future Medical Inquiry
- Sharing information with SKS community on current natural history studies for SKS / MTOR
- Formed Medical & Scientific Advisory across multiple institutions and disciplines (circadian, MTOR pathway, neurology, genetics)
- Designed and launched the SKS global patient registry to make comprehensive data points available for all researchers
Where We're Headed
- Continuing awareness-building through family outreach, social media campaigns, other media outlets
- Expanding our patient-led network
- Translating SKS Patient Registry to increase access in non-English speaking regions
- Increasing rate of SKS diagnosis and encouraging increase of nearby SKS-aware physicians for families
- Encouraging publication of current and future studies (in progress)
- Continuing to raise money to accelerate SKS research
Dr. Andrew Liu describes the groundbreaking research SKSF is actively supporting:
Financials At A Glance
Year 3 (ending June 30, 2022)
In our third year, SKS Foundation was awarded a grant to build our capacity from the Chan Zuckerberg Initiative #RareAsOne Network. This amazing grant provides SKSF $200,000 per year for 3 years for a total of $600,000.
The Rare As One Network is a group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases.
Additionally together we raised $56,000 and awarded another nearly $59,000 in grants for research. Thank you!!
Year 2 (ending June 30, 2021)
With generous support and hard work, together we raised over $100,000!! Thank you!
We awarded nearly $89,000 in grants for research.
And with almost $25,000 in savings, we were able to quickly make our next research award. (But that’s for next year’s highlights!)
Year 1 (ending June 30, 2020)
We were (and are) a new organization so spent our first months launching the foundation. After we completed that work, Blue Signal started 2020 with a generous donation in January. When we received our 501(c)(3) determination from the IRS in April 2020, our fundraising began in force. We kicked that off with the very successful first Workout of the Day in May.
Tax Returns
Attached are scanned copies of our IRS Forms 990 for our July 1 to June 30 fiscal year.
Guidestar Nonprofit Reports
As part of our commitment to transparency, we are also a Candid GuideStar member. You can find additional financial details and information about our operations on their website.
