Advocacy 101: Making Goals with your Scientific / Medical Advisory Board
At the National Organization for Rare Disorders (NORD) Rare Disease & Breakthrough Summit in Washington D.C., Rare Disease Report spoke with Monica Weldon, founder of Bridge the Gap – Syngap Education and Research Foundation about her advice for nonprofit organizations wanting to create goals for their scientific and medical advisory board members.
The key, according to Weldon, is to set attainable and measurable goals over a 5-year period and decide what steps are necessary to achieve them.
The group at Bridge the Gap – Syngap met with its scientists and listed all the skill sets that each person has and what they can offer. From there, it was made known what the scientists think can be achieved over time and what they would need from the organization in order to do so.
Bridge the Gap – Syngap developed 3 goals: the biggest of which is to collect as much data as possible in their registry (natural history study) and have 200 completed surveys by the year 2020. Weldon explained that, while ambitious, the goal is a measurable one, and if that number needs to be adjusted in the coming years, it certainly can be. Either way, having a measurable goal is helpful in monitoring the progress of any project.
They primary goal chosen is meaningful because it is assists the scientists in conducting or supporting their own research and their ability to get future funding.
SYNGAP1 is a rare disorder that leads to intellectual disability, speech delay, hypotonia, and a plethora of other neurocognitive and behavoural disorders. Very little is currently known about the condition other than the fact that it is linked to mutations on the SYNGAP1 gene. The Bridge the Gap – Syngap Education and Research Foundation was formed in 2014 to improve understanding of the rare condition so that is can be managed more effectively.