SMS: How You Can Help

Easy. You can poke around these Damian pages and click on a few links and learn about one of the many rare chromosomal syndromes that exist. (Hey, since MY kid has SMS, that’s the one I happen to care/know about the most.) Also, you can talk to your friends with special needs kids. Learn about the kids and their families. Don’t be afraid; they’re not monsters. You can stop calling things and people “retarded.” My son is clinically retarded. Know that, respect that.

(Hoang and I both used to toss around the word freely before Damian’s diagnosis, so I’m not one to be a jerk about its usage. Though I WILL bring up my discomfort with it most times.) Check out the website, The R Word for more on the campaign to educate people.

As we SMS parents begin to mobilize and connect more online, several groups are fundraising for SMS. ALL are worthy and if you’re feeling donate-y, these are all good places to help out.

  • PRISMS, THE main SMS organization, with international reach. Been around the longest and provides a place for parents to go for information, research studies and contacts. PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) hosts conferences every 2 or 3 years as well.
  • SMS Reasarch Foundation – Started by Connecticut homegirl Jen Iannuzzi and her friend Missy Longman in Florida, what they have done is nothing short of amazing. Raising $50,000 in the first half year or so of existence. 100% of monies collected through the SMSRF goes to research grant money for SMS research. Period. They have events in southern CT, Florida and walks elsewhere, so check it out. Our Damian fundraiser in September 2011 will benefit the SMSRF.
  • Taylor Bug Kisses – started by our friend Shannon out in Illinois and is dedicated to providing funding for medical research, educating, and providing financial assistance and emotional support for families who have a child with Smith-Magenis Syndrome. That last part is what makes this foundation unique and pretty darn cool. The therapies and medications our kids require are often quite expensive – and quite imperative.
  • Leave a Comment

    The Out Campaign: Scarlet Letter of Atheism