About us
Our goal is to help families and children with Lowe Syndrome through education, research, and community engagement.
The Lowe Syndrome Association (LSA) isregistered as a not-for-profit corporation in the United States. As a rare disease nonprofit, we are dedicated to helping families and children with Lowe Syndrome through education, research, and community engagement. Our community is international in scope representing approximately 25 countries from a multitude of ethnic, demographic and socio- economic backgrounds. The LSA is governed by a Board of Directors comprised of caretakers, parents, professionals and friends who are passionate about implementing LSA’s mission. We consult with a professional Medical & Scientific Advisory Board on matters of clinical and research related interests. The LSA is officially incorporated in Chicago Ridge, Illinois and our Board of Directors are located throughout the United States. Our website provides an overview of the condition and our community- www.lowesyndrome.org
What is Lowe Syndrome?
Lowe Syndrome or oculo-cerebro-renal (OCRL) syndrome was first described in 1951 by Dr. Charles Lowe and colleagues. It is a rare genetic condition that affects males and causes physical, medical and cognitive challenges. In a nutshell, Lowe syndrome impacts the eyes, brain and kidneys, the nervous system, with intellectual disability, obsessive-compulsive behavior, and seizure.
*About us* Our goal is to help families and children with Lowe Syndrome through education, research, and community engagement. . The ideal candidate possesses excellent communication and technology skills, is organized and responsive, and enjoys engaging with people. This is a perfect fit for a motivated, skilled individual (min. 3 years’ experience) seeking a break from fast-paced, high stress roles who wants to make a difference in others’ lives. We are seeking someone who is: 1) a self- starter (does not need oversight for all tasks), 2) responsive (acknowledges incoming requests within a day of receipt), 3) prioritizes work product (people over paperwork), with a positive, “can do” attitude. This position is part time (5-10 hours/week), reports to the President of the LSA and will have a broad view of the work across the organization. Welcome members with LSA materials, reminders to complete our patient registry, send thank you cards, birthday /condolence cards and other acknowledgements. Assist with LSA conference (every 2-3 years). Manage an online calendar, schedule meetings (doodle polls, zoom technology). Proficiency with Microsoft office such as Word and Excel. Mail, Accounts Receivable & Bank Deposits- Receive incoming paper and online mail and respond accordingly, process checks and credit cards. Prepare mailing labels for Campaigns as needed. Quick Books & Salesforce- Proficiency to maintain LSA community records, member data, and donations. Google/cloud based platform- Proficiency for organizing Board files and ensuring information is sustainably maintained. Analytics- Leverage databases to identify trends in donations, analyze information regarding Lowe Syndrome patients as needed. Social Media Platform proficiency to ensuremessages to the LSA are acknowledged/addressed, and stay abreast of community fundraisers.
Pay: $25.00 per hour
Benefits:
Schedule:
Work Location: Remote
Entry Level Java developer – US/Canada Residents only, Full-Time, Salary $55K-$65K Minimum 1 year of project experience required – fully...
Apply For This JobJOB REQUIREMENTS: At CLA we create inspired careers. We recognize that not everyone wants to grow their career in the...
Apply For This JobTo get the best candidate experience, please consider applying for a maximum of 3 roles within 12 months to ensure...
Apply For This JobOutpatient Therapist : Must have a minimum of a Bachelor’s degree in psychology, social work, marriage and family therapy, counseling...
Apply For This JobCompany Description Jobs for Humanity is dedicated to building an inclusive and just employment ecosystem. Therefore, we have dedicated this...
Apply For This JobEarn up to $20 per hour! OUR DISHWASHERS EAT FOR FREE! Famous Dave’s is looking to add to our BOH...
Apply For This Job