Imagine being a Grandma…..Imagine finding out your Grandson has been diagnosed with a rare and life threatening disease.
Pauline, better know as Ninja Nana because she will never give up finding a cure for JM, is Kinser’s grandma.
Kinser is a first-grader and was diagnosed in August 2010.
Juvenile myositis is an autoimmune disease with the primary symptoms being weak muscles and what appear to be skin rashes. Instead of the immune system protecting the body by attacking infections and other agents, the immune system begins attacking the body. JM encompasses different subcategories, the most common being juvenile dermatomyositis (JDM).
Cure JM was co-founded in October 2003 by three women whose children or grandchildren have JM. Shari Hume, one of co-founders, has a son who was diagnosed at 4. It took six months to diagnose her son, now 14 and in remission.
JM is believed to be the result of multiple genes and environmental factors. The disease can go into remission and be brought back by triggers like sunburn, colds/viruses and vaccines.
Since JM is a rare disease, affecting about 17,000 across the country, drug companies don’t heavily research it.
Ninety-five percent of Cure JM’s finances go toward research grants and programs. The foundation, which was the top-rated nonprofit in 2011 and 2012 by Great Nonprofits, relies strictly on volunteers.
They don’t have government grants or big corporate sponsorships.
This was not just a local fundraiser that the Ninja Nana, Pauline pulled together but a giant statewide fundraiser with Chuck E. Cheese’s.
When I met Kinser…I just wanted to squeeze and hug him and make it all better…He was having a great time playing the games and winning tickets at Chuck E. Cheese’s.
They say he loves to play Mario Games and Soccer.
Children from the ages of 5-15 are the primary patients of JM. JM affects 3-5,000 children in the United States.
Trouble climbing stairs or moving from a standing to seated position; getting dressed
patients may complain of being unable to rise from a low-seated chair or comb their hair
Characteristic reddish-purple rashes of JM—Gottron’s papules (bumps found over the knuckles, elbows and knees) and heliotrope rash (purplish rash around the eyes)
Hardened lumps or sheets of calcium (calcinosis) under the skin
Difficulty in swallowing (dysphagia)
What can you do to help?
Spread the word about the symptoms of JM
Donate to The Cure JM Foundation http://www.curejm.org/donate/index.php
Come to your local Cure JM Foundation fundraisers. Become my friend on Facebook…I will be posting them all…http://www.facebook.com/cat.lambert.129?ref=tn_tnmn
VOTE trying to win a $250,0000 Research Grant >>>http://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=location|/search/index/submit/Search%3Fkeyword%3D26-0687439+or+35-2222262%26submit%3DSearch%26location%3D