Administrative Assistant/Database Administrator, LSA
We are seeking an organized, motivated individual with nonprofit experience, eager to contribute their skills and knowledge to make a difference in the rare disease nonprofit sector. The ideal candidate will have proficiency in administrative tasks, particularly with QuickBooks, basic Salesforce/customer relationship database management, content generation for digital newsletters and email, data collection/tracking and social media skills (Facebook/Instagram). Experience with design tools like Canva is a plus. This part-time role (5-10 hours per week, depending on projects) works closely with the LSA President and Treasurer. Hourly pay is $25/hour.
Who Are We?
The Lowe Syndrome Association (LSA) is a dedicated not-for-profit corporation based in the United States. Our mission is to support families and children affected by Lowe Syndrome through education, research, and community engagement. Our international community spans approximately 25 countries, encompassing a diverse array of ethnic, demographic, and socio-economic backgrounds. Governed by a passionate Board of Directors—including caretakers, parents, professionals, and friends—the LSA is also advised by a professional Medical & Scientific Advisory Board on clinical and research matters. For more information about our community and the condition, please visit our website at lowesyndrome.org.
What is Lowe Syndrome?
Lowe Syndrome, also known as oculo-cerebro-renal (OCRL) syndrome, was first identified in 1951 by Dr. Charles Lowe and his colleagues. This rare genetic condition primarily affects males, causing a spectrum of physical, medical, and cognitive challenges. It significantly impacts the eyes, brain, kidneys, and nervous system, often leading to intellectual disabilities, obsessive-compulsive behaviors, and seizures.
Who is the Ideal Candidate?
We are seeking an organized, self-starting individual with nonprofit experience, eager to contribute their skills and knowledge to make a difference in the rare disease nonprofit sector.
Key Responsibilities:
- Administrative Support: Provide primary support to the LSA President and Treasurer, and assist other team members as needed. Must be proficient with major online applications.
- QuickBooks & Salesforce: Maintain community records, member data, and donations. Manage QuickBooks for donations (through Stripe), categorize expenses, and complete monthly bank reconciliations. In addition, the individual will distribute thank you letters and receipts for check donations.
- Google/Cloud Platform: Utilize Google Docs, online calendars, Doodle polls, Zoom technology, and Microsoft Office (Word and Excel) to organize Board files and ensure sustainable information management.
- Writing/Tracking: Assist with content creation for the digital newsletter (2-4 issues per year), collect contributions from others, manage timelines, track donations for inclusion in newsletters, maintain key LSA metrics, and take minutes for bimonthly LSA calls (5-6:30 p.m. ET).
- Analytics: Use databases to create and share reports on trends in donations, donors, LS family membership, deaths, and new families.
- Social Media: Manage the LSA’s presence on platforms like Instagram and Facebook, ensuring messages are acknowledged and addressed, and staying updated on community fundraisers. Post as needed.
- Community Engagement: Welcome new members with LSA materials, guide them on how to get involved, send reminders to complete the patient registry, and issue condolence cards and other acknowledgments. Assist with logistics for the LSA conference (held every 2-3 years). Send community emails for reminders, events, or fundraisers, and distribute thank you letters and receipts for donations.
Thank you to our sponsors and partners
