What a year! 2020 certainly brought change to all of us. What started off as a year looking forward to being together for our 3rd annual SATB2 Family Conference was quickly put to a halt. Our board met frequently to discuss what was best for our community. Although we had to cancel our in-person conference, we were able to be nimble in adjust our goals for the year to best serve our community.
We are proud of all that we were able to accomplish in 2020 despite the hardships we faced. We hope you will reflect upon our year in review and also be proud of all that we were able to accomplish, because of you, our supporters. From our families, volunteers, donors, and beyond, we are thankful for each and every one of you.
Operational & Administrative
- Raised $118, 935 in donations
- Received $32,500 from grants
- Added 2 new board members, Casey Edwards and Bill Regan
- Launched new website, contact registry and resource portal
2020 Family Support
- Provided $12,500 in direct assistance to 14 families facing financial hardships due to the COVID-19 Pandemic thanks to the Global Genes RARE Patient Impact Grant.
- Support group grew by 115 global members, marking 500 known families in 45 countries.
- Produced a total of 18 educational webinars on topics ranging from AAC, Toilet Training, Estate Planning, Advocacy and more.
- Supported 31 families with $150 gift cards to assist with immediate household needs due to COVID-19 Pandemic.
- Supported 10 families through Travel Grants to attend the SATB2 Multidisciplinary clinics at Arkansas Children’s Hospital and hosted welcome dinners at each of the two clinics thanks to the Child Neurology Foundation Rising Tides Grant.
2020 Awareness Day
- Raised $22,000 towards SATB2 research
- Completed funding to develop Induced Pluripotent Stem Cells (iPSC’s) and oversaw coordination of project with the MSAB and Cedars-Sinani. A total of 8 cell lines (4 Patient and 4 Control Lines) were developed.
- Official application is available online for researchers interested in use of the iPSC’s for research.
- Awarded 2nd annual Research Grant. Awarding $20,000 to Dr. Sarah Vergult of Ghent University and $8,000 to Dr. Yuri Zarate of Arkansas Children’s Hospital.
Plans for 2021 are underway. Here is what is on our horizon:
- Partnership with Odylia Therapeutics to undergo a Gap Analysis and develop a Research Strategic Roadmap. Odylia had expertise in both preclinical and clinical drug development for rare disease.
- Focus on Strategic Research Development, expansion, and collaborations, including use of iPSC’s.
- Launch of a Parent Research Advisory Committee.
- Continue to work with the Medical and Scientific Advisory Board to further grow and advance research knowledge.
- Launch a SATB2 Family Assistance Program.
- Continue support of Travel Grants for families to attend the SATB2 clinics at Arkansas Children’s Hospital.
- Host robust webinar series to provide educational topics that are important to our families.
- Tool Kits and information for families.
- Collaborate and expand our international partners.
- Development of the next 3 year strategic plan for 2022-2024.
Fundraising through the years:
- 2017: $5,253
- 2018: $40,318
- 2019: $149,421
- 2020: $118,935