Biking For CLOVES Syndrome Community

We are bike riding and raising money for CLOVES Syndrome Community again this year!!
Our goal this year for the bike ride is $2,500!
Since, this is a virtual event, we are making it a family event as we did last year! Hopefully this year, Victor doesn’t have a seizure the day of the event - June 12th as he did last year!
Victor has been on Piqray since mid August of 2020. This drug still isn’t in drug trials in the US so we have access to the medication through compassionate use. He is monitored every 2 months currently and has been tolerating this gene inhibiting drug well.It can be harsh on his liver and kidneys as well as cause increased blood sugars.
He is also on a mainly low carb diet on addition to 4 other seizure meds to try and control his epilepsy. The hope was his seizures would stop by 6 months on this medication, but he is still having seizures. Although, they have continued to space out which is hopeful. His last seizure was on March 24th - which was 11 weeks from his previous seizure! This is great progress compared to every 3-4 weeks and sometimes weekly previously.
This medication can have debilitating side effects, and not every patient is able tolerate the med. which breaks are heart for the others who need a medication that they can tolerate. There may be other medications that work even better with less side effects, which is why this fundraiser for research is so important to us.

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