This Sunday a group of my closest friends and I will be running in the White Rock Relay to support a cause near and dear to all of us. We will be running to raise money to support Nuerofibromotosis research.
Do you see this little precious guy above? His name is Jake, and he is the son of one of my best friends Kristen and her husband Chris. Around his first birthday he was diagnosed with a genetic disease called Nuerofibromotosis. Finding out this news was a shock and heartbreaking for them as well as all of us.
Nuerofibromotosis is one of the more common genetic disorders, which is surprising since it's not well known. Most cases of Nuerofibromotosis are mild, however in severe cases it can be debilitating. Presently, there are few treatments and no cure. If you are interested in learning more about NF, you can visit http://www.ctf.org/.
At this point Jake is doing excellent and has no issues from NF. I firmly believe he and other NF sufferers have a bright future due to all the brilliant scientists and research geared toward finding a treatment and eventual cure. The research is relatively new, one reason why the money raised is so important. Every dollar counts, and this is why we have come together to run!
Please take some time to visit their fundraising site and learn more about Jake and NF. If you feel led, you can donate to help fund research. If are unable to give monetarily, thoughts, prayers, and spreading the word about this relatively unknown disease is appreciated. I know Chris, Kristen and Jake and all of us runners are grateful for any and all support.
Thank you for taking the time to read and care.
3 comments:
Very well put! I am so excited for us all to be doing this together!
Hey there! Wanted to answer your Q about UGM and if you're like me, I never check back after I leave a comment.
Nick and I volunteer at Union Gospel Mission on Tuesday nights just us two. If you look on their website there is information on how to get started. You just have to go to an orientation and fill out some paperwork. It is great and there is such a need for tutors especially teachers!!, but I will say it is quite a commitment. But there are other things you can do besides tutor that aren't a weekly commitment.
And you can tutor any night M-R if you're interested. We just picked Tuesdays. It's from 5-7.
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