It’s that time again for our fundraiser during the Kentucky Derby Mini Marathon. During COVID 19 we have been unable to run. So we are so happy to have a team again this year.
For Noah and many others I’m sure it has been a hard 2 years of not getting to be as social as they were before. Noah is well thanks to you and the research that has been done to improve treatment for ECD patients. We were lucky to start some new medication to treat Noah’s ECD and try to help with the disabilities that ECD has left behind. For Noah this medication was not a match. However he was able to go back on his past medication and stay stable with his ECD. Many of you might not see the importance of research and donation that help fund these but without it Noah wouldn’t be doing as well as he does along with the other ECD patients. So thank you for funding new research and thank you for funding past research that enables Noah to still be fighting Erdheim-Chester Disease. One day we will find a cure, until then we keep fighting with Style.
Please think about donating. Thank you
For Noah and many others I’m sure it has been a hard 2 years of not getting to be as social as they were before. Noah is well thanks to you and the research that has been done to improve treatment for ECD patients. We were lucky to start some new medication to treat Noah’s ECD and try to help with the disabilities that ECD has left behind. For Noah this medication was not a match. However he was able to go back on his past medication and stay stable with his ECD. Many of you might not see the importance of research and donation that help fund these but without it Noah wouldn’t be doing as well as he does along with the other ECD patients. So thank you for funding new research and thank you for funding past research that enables Noah to still be fighting Erdheim-Chester Disease. One day we will find a cure, until then we keep fighting with Style.
Please think about donating. Thank you