Friday, May 8, 2015

To pay for all of those "Kandu"s (why I advocate part 5 of n)

One of the reasons I'm blogging this "streak for stroke" is to help fund raise for the Children's Hemiplegia and Stroke Association (CHASA).
CHASA is a small, small budget organization.  If the "one handed shoe tie challenge" that we've been talking about went viral like the ALS ice bucket challenge, the volunteer administrators wouldn't know what to do (but I'm sure it would be a nice problem to have).  CHASA programs are all focused on a simple goal: helping families of pediatric stroke survivors* and most are similarly straight-forward. They include (but are not limited to):

  • Connecting families virtually and in person to trade tips, victory stories, and shared gripes in order to help combat the isolating feeling that nobody else quite "gets this".
  • Serving as an information clearinghouse for diverse topics from "how to phrase bi-lateral coordination such that it is an educational goal" to "are there ANY shoes wide enough to fit over an AFO?" 
  • Connecting research studies with potential participants and funding pilot studies.
  • Setting up a shoe exchange.
  • Providing grants for orthotics not covered by insurance.
  • Providing small scholarships for college and professional schools/
  • Sending stuffed penguins to children with hemiplegia and asking the children to create appropriate orthotics for it.
I'm well aware that stuffed penguins are not solving world hunger, but I have watched the CHASA Facebook feed and have been in tears over the obvious joy when some of the kids unpack their kandus.  I've shed even more tears looking over the photographs of kids with their penguin in a matching orthotic who are crazy-excited to see the photographs of the other kids with their penguins and their braces, because it means that they are not alone.

If you were to financially support CHASA, you could do it be setting CHASA as the recipient of your Amazon Smile page or by donating directly to Megan's Birthday (no, I don't know Megan) or any of the other Crowdrise pages.


*Hemiplegia is one sided-weakness.  It is a set of motor and muscular problem that results from brain damage. If the brain damage was before 2 years of age and is non-progressive, then it is often diagnosed as cerebral palsy.  Not all kids with hemiplegia (or hemiparesis or hemiplegic cerebral palsy) had strokes, and not all pediatric stroke survivors have hemiplegic, but among the CHASA families, kids with both is the largest single group.  Aster had a stroke in utero and was diagnosed with cerebral palsy right after his second birthday.

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