Friday, August 1, 2014

Raising Awareness about #IncontinentiaPigmenti #RareDisease #CareAboutRare @whodoUrun4 #LukeRuns4Melody

You are aware that I am a part of the group "I Run For Michael".
If not, let me give you a little information.
I Run For 4 was started by founder Tim Boyle. He set out to run his first official 5K run and one of his Facebook friends commented on it. His comment was simple yet profound. He said "you can run for me anytime!" This friend was Michael.

Photo Credit: Who I Run 4 Website

Thus I Run For 4 was born. Boasting over 23,000 members now. I Run For 4 is comprised of Parents of Children with Special Needs, Young Adults with Special Needs, and People who want to make a special connection and Run [walk, jog, swim, bike, skateboard, rollerblade, etc] for those who cannot.
I was matched with Joshua {who has Cerebral Palsy] in November 2013. My BFF Karina was match with Alexis [Who has Sickle Cell], her cousin Meagan is matched as well with a young adult with Special Needs. My step-sister is waiting to be matched with a buddy, but her son [who has Downs Syndrome] has a runner for him. My son Luke is matched with Melody.
Melody is a precious little girl who has Incontinentia Pigmenti.
By definition via Wikipedia:
Incontinentia pigmenti (IP, also known as "Bloch–Siemens syndrome,"[1] "Bloch–Sulzberger disease,"[2] "Bloch–Sulzberger syndrome"[1] "melanoblastosis cutis," and "nevus pigmentosus systematicus") is a genetic disorder that affects the skin, hair, teeth, nails, and central nervous system. It is named due to its microscopic appearance.
Melody's Mom says she has "Zebra Stripes".  Right now, that is what her IP looks like.
But this disease is rare and right now there is no cure.

You can learn much more by visiting Incontinentia Pigmenti International Foundation.
You can find out about this rare disease, find out about research, and get family support.
So if you know someone with a Rare Disease, spread the word.
Raise Awareness !!
Do Something Amazing !!

1 comment:

Thank you for sharing your ramblings with me