A few months ago I received an email from Danielle, a film student at Ryerson University and a part time lifeguard at the pool where Jacob swims. Here is an excerpt from her message: Last year I worked on Thursday nights, guarding during the half hour that Jacob swam with Larissa, and every single night [...]
Here is a link to an interview I took part in about the challenges children with special needs have in making friends: About this Video For children with special needs, making friends can be a big challenge. Three Moms share their stories and offer advice in this discussion: Marcy White, Mary-Lou VanBerkel and Louise Kinross [...]
NEWARK, Calif., April 2, 2012 (GLOBE NEWSWIRE) — StemCells, Inc. (Nasdaq:STEM) today announced preliminary evidence of progressive and durable donor-cell derived myelination in all four patients who underwent transplantation with the Company’s proprietary HuCNS-SC® cells (purified human neural stem cells) in its clinical trial for Pelizaeus-Merzbacher disease (PMD), a rare hypo-myelination disorder in children. In [...]
6 Things You Don’t Know About a Special Needs Parent Posted: 03/ 9/2012 5:21 pm The following is a post from Maria Lin, a mother of a child (also named Jacob!) with special needs. It was posted on Huff Post Parents Canada: About 6 million kids in America receive special education, according to the U.S. [...]
Many people talk about integration, and there are many programs that are “integrated”. But what I’ve learned over the past number of years is that just because something is marketed as integrated, it doesn’t mean it is. And, despite the best of intentions, there are more cases of integration being done poorly than there are [...]
This winter Jacob participated in a ski program through the Canadian Association for Disabled Skiers (CADS) for the first time. The program was fantastic, and Jacob had an incredible time. Yesterday was his last day for the season and I had the opportunity to ski with him – I even steered him down the [...]
Read about Codie, our latest addition to the PMD Community page: Our family consists of myself (Tammy – Codie’s mom), my husband Blaine (Codie’s dad), Codie (who was born on November 4, 1990) and our daughter Hunter (who was born on May 18, 1999). We live in Orangeville, Ontario and we deal day by day [...]
My friend Louise recently wrote a raw and courageous post about the challenges she faces with her disabled son, Ben, and his lack of friends: http://www.huffingtonpost.com/louise-kinross/genetic-disability-friendship_b_1263895.html She references several articles and a British study entitled Does Every Child Matter? with the same theme: kids with disabilities have a harder time making friends and in many cases [...]
As you might have noticed, we have recently revamped our entire Cure PMD website, and added a Cure PMD facebook page. If you haven’t already seen the fb page, take a look and “like” it! One of my favorite pages on our new site is the PMD Community page where we have started gathering stories [...]
From The Holland Bloorview Kids Rehabilitation Hospital Foundation “Jacob now has a voice thanks to Dr. Tom Chau and the amazing team of researchers who work with him.” – Marcy, Jacob’s mom If you want Jacob to bust into giggles, tell him a joke that involves, um… flatulence. Or just sit on a whoopee cushion. [...]
