Mike is the Managing Director of SRF.
On July 15, 2019 I wrote an article saying that in the year I had been diagnosed, everybody had the same unchanging answer to “how many are there?” They all said “about 200.” So I asked every country leader I knew, went through lists ands said “here it is at least 364, and that’s way too low, but it’s what I know today.” My inbox was flooded, people raised their hands all over the place and I kept updating the same article.
This number matters. Companies invest in drugs based on numbers of patients diagnosed and how fast they are being found. We urge everyone to reach out to SRF or any of our partners in SGN and make sure we have you on the list. Also, please put a pin on the SynGAP Map to see who might be close to you.
The summary data is in this Google Sheet. In the USA we added 12, in the UK 2. Our partner groups in key countries help us keep the #SynGAPCensus straight: Overcome Syngap identified 10 in France. Syngap Elternhilfe identified 7 in Germany. Syngap Italia found 2. Syngap Research Fund Australia (great name) and Syngap1 Japan Network both found 1.
In countries without organizations it is harder to find people and if you are a parent in a country that does not have a group, please start one. (Lots of other good reasons to have one besides counting, please let us know how we can help.) We did manage to identify previously undercounted SynGAPians in China (5). We also found a SynGAPian in each of Brazil, Poland, Belgium & Morocco.
We also had four new countries join the list with one diagnosis identified in each of Singapore, Saudi Arabia, Hong Kong & Monaco.
The known US population grew by 12 from 179 to 191. SRFs Family Empowerment team, aka Ambassadors, reached out to all of these families, shared a welcome pack and let them know we are here if they have any questions.
When you understand how low this count is and why, it is heartbreaking. We connect with these families after they have a diagnosis and just getting that far is hard. Too hard. Too few families get tested for a variety of reasons including cost. Not enough are aware of programs like Behind the Seizure. This number is only those who were lucky enough to be diagnosed, got online and found Syngap groups. How many have we missed?